Know the Danger of Sepsis!

Recently, because of my post last week which made a reference to septic shock, I was contacted by the Sepsis Alliance, a non-profit that is trying to help people understand and avoid the danger of sepsis. http://www.sepsisalliance.org/ A google alert highlighted me to them - that I am a survivor of sepsis (going up right to the verge of severe sepsis/septic shock but did not go fully into either).

Since that time, I have become connected to the non-profit, and the physician, Dr. James O'Brien, M.D., who leads many of their medical efforts. Surprisingly, what the Septic Alliance will tell you is that a recent Harris Poll study showed that only 1 in 3 Americans have heard the term "Sepsis," and even fewer understood how extremely dangerous it is. The non-profit is geared toward changing that, since sepsis is a condition that a little education will go a VERY long way.

ANSWER THESE THREE QUESTIONS: While you might know sepsis by another name, "blood poisoning," that might still not get your attention to appreciate the danger of sepsis. Instead, what if I described it with three questions:

QUESTION NO. 1: If you knew there was a very horrible carnival ride that you could go on called septic shock/severe sepsis, that 40% who went on it would die a pretty horrible death after being in an ICU for 3-4 days, and of those that survived, a VAST majority of the remaining people would loose your kidneys, fingers, legs, arms or other organs, would you volunteer to go?

QUESTION NO. 2: What if I told you that any sort of infection you might have (post surgery wound, strep, H1N1/flu, appendicitis, pneumonia, scratch, whatever), at some point if it is left unaddressed long-enough without proper treatment, could fester, go septic, and once septic, at some point it could slide - in a matter of moments - from sepsis into septic shock or severe sepsis, would you feel lucky? What if I also told you that there is not a real scientific way to know at what point people might go from infection into sepsis, then into severe sepsis, in each individual. Would you gamble your life?

QUESTION NO. 3: What if I finally told you that if it is caught early enough and treated properly - all infections can be cured without sepsis. Even septic infections, like mine, if treated quickly enough with IV antibiotics, fluids, and careful monitoring, are survivable without consequences that are so horrible. If you could never go on the ride in Question No. 1 above, would you want that detour instead?

Yes, of course you would. Sepsis does not have to kill or disfigure. You just need to seek medical attention for any infection that is at all bad, make an appointment with your regular doctor when it first seems to arise. If you are at all fearful or suspect sepsis, voice that concern to your doctor, to the ER, to any other medical professional that sees you, so they can rule it out. Sepsis does not have to kill 215,000 Americans each year. It is a medical emergency, but with early detection and treatment, your outcome can be like mine - survival without organ loss or amputations. For those wanting more details, I provide more below.

In a nutshell sepsis is your body's response to a severe infection; once the body believes it is sufficiently endanger, it will cause a series of events that leads to cascading organ failure in short order, that will kill almost 1/2 those that experience it. Does everyone go septic with severe infections? I don't believe it is known, but many people will go septic in such situations at some point. For you to decide where that point is, without medical advise, if decided wrongly, puts you into Question No. 1 above. Once you enter the ride, though, and you won't know when it begins, it is one of the most deadly things you can face.

Clinically speaking, patients are given a diagnosis of sepsis when they develop clinical signs of infections or systemic inflammation; sepsis is not diagnosed based on the location of the infection or by the name of the causative microbe. Physicians draw from a list of signs and symptoms in order to make a diagnosis of sepsis, including abnormalities of body temperature, heart rate, respiratory rate, and white blood cell count. I was septic with a localized, severe pain, a fever that started to show at around 100, a high blood pressure, an extremely high white cell count (13,100), and a high pulse. Sepsis may be diagnosed in a 72-year-old man with pneumonia, fever, and a high white blood count, and in a 3-month-old with appendicitis, low body temperature, and a low white count.

Sepsis is defined as "severe" when these findings occur in association with signs of organ dysfunction, such as hypoxemia, oliguria, lactic acidosis, elevated liver enzymes, and altered cerebral function. Nearly all victims of severe sepsis require treatment in an intensive care unit for several days or weeks. While most cases of sepsis are associated with disease or injury, many events follow routine, even elective surgery. While some patients may enter severe sepsis by shock, not necessarily all do. More frightening is that sepsis can rage in response to incidents as seemingly benign as a playground scrape or a nicked cuticle from the beauty parlor. American hospitals spend approximately $20 billion each year combating sepsis, 40% of patients diagnosed with severe sepsis do not survive. Until a cure for sepsis is found, EARLY DETECTION is the surest hope for survival. If these stats frighten you, and they should get your attention, consider watching the videos on the Sepsis Alliance website at: http://www.sepsisalliance.org/resources/video/emergency/

For stories of people less fortunate than me, see:
http://www.sepsisalliance.org/faces/ Their website provides a lot of great things to look for so you are better informed about sepsis, to save your life and those of people close to you. If you see why I feel lucky surviving sepsis, share this blog with your friends so they know how to be lucky and wise, too.

Catherine Wicker: You Are My Hero!

“When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became [an adult], I gave up childish ways.” 1 Corinthians 13:11 The quote above speaks to most of us, regardless of our religious beliefs. For most of us the quote reminds us of the carefree nature of our own childhood. Frankly, most of us become “grown-ups” when we first fully understand the complexities of life and the uncertainty of it all, when we are no longer able to live relatively carefree. Many children do not get such an experience, though. For some of these children, as with many extremely special things in life, they are like diamonds and other precious metals and gems – by the force of great pressure, their most precious light might shine brightly and provide a beacon to the world. One such beacon and star is Catherine Wicker. Catherine is a 14 year old freshman at Westwood High School, in Austin, Texas. If you were not paying attention, Catherine might appear at first blush like most young people. She is not.

Since the tender age of 5, Catherine had to give up her “childish ways,” and at the age of 10, Catherine had her colon surgically removed because of her health condition. Ulcerative colitis is an auto-immune disease and is caused by an abnormal response of the body’s immune system. The disease is marked by inflammation and ulceration of the colon, symptoms can include bloody diarrhea and severe abdominal pain. In severe cases, patients may in fact have their colons removed; most often, though, the condition only strikes adults this badly and not children so young as Catherine.

While such a condition itself would cause most adults many decades older than Catherine to lose heart in life because of the complexities that it can bring, Catherine at such a young age did not. Catherine simply dug in deeper and became more determined to show that her life had significant meaning and found the joys remaining to her. She has achieved that result. As a poet I could offer words capable of expressing things as beautiful as Catherine’s spirit, but as a lawyer I know that overly worked words do little in comparison to the facts.

Not too many years ago, many may know that I experienced diverticulitis and was on the verge of septic shock in an Austin ER at the age of 39. I was highly fortunate in surviving since septic shock kills a majority of those that suffer it. For many that do survive, they often may lose their kidneys or other organs; I did not but did develop IBS and have other recurrent health problems since that time. I came to understand better that life is fragile and the thought of losing organs was very scary even for me. I had, at least, enjoyed many opportunities up to that point without as much concern. I cannot imagine the weight that more expansive conditions could cause to a person so much younger.

Imagine your own life with such difficulties! Imagine being limited in activities that others enjoy, such as a basic party or a carefree vacation as a child. At such an age, if you are limited, your peers also cannot easily understand why you cannot join them, or how your life must be! Imagine the fear of standing out in such bright light and the desire that most would have to hide in the shadows and suffer silently. Catherine has stood strong and tall, even at her small stature.

In 2004, when Catherine was in the second grade, she stood in the halls of Congress to lobby for the efforts of the Crohn’s and Colitis Foundation. The foundation chose her as one of its two national Local Heroes (now called the Comeback Kids Award) several months later. In 2006, Catherine returned to Congress with her dad, Paul, to again lobby for legislation needed by adults and children with her condition. The following year, Catherine then set her sights on the Texas Legislature, initiating efforts for the Restroom Access Act, HB 416 of the 80th Regular Session, which became law in 2007.

For a bill that was hotly contested by businesses concerned about its effects, Catherine made sure to bear witness on how the bill impacted the needs of children, like herself, and adults, who have a health condition that can, without accommodation, be debilitating. On April 10, 2007, Catherine testified before the House Committee on Public Health for the Restroom Access Act. Catherine later also testified before the Texas Senate. How many of us have taken on the legislative process to help others with such courage? Anyone? I asked Rep. Mark Strama, the author of HB 416, for his thoughts on Catherine. With deep respect and admiration for her, he relayed this to me:

"When I give speeches to students about the government process and how a bill becomes a law, I tell them the story of how Catherine Wicker, while a fifth grader at Caraway Elementary in my district, convinced me to file legislation to help people who, like her suffer from intestinal illnesses. She then testified for the bill in both the House and Senate committee hearings on the bill, lobbied the bill through both houses of the Legislature, and stood next to the Governor as he affixed his signature to the newly created law. She changed the law in Texas to the benefit of 35,000 Texans who suffer these illnesses, and she did it when she was 10 years old. She has since lobbied me to buy Girl Scout cookies for troops overseas and to pass a resolution honoring her favorite teacher. She never stops.
"When she began working with my staff on the legislation we passed together, I remember someone asking her what she wanted to be when she grew up (as if she wasn't already grown up), and she said, 'I want to be chief of staff to a member of the House of Representatives.' Made my chief of staff happy! I remember when we attended the bill signing together 6 months later, and the Governor asked her what she wanted to be when she grew up. She didn't hesitate: 'Governor.'"

Mark Strama, Member, Texas House of Representives, Dist. 50.

Catherine heart and brilliance is, however, not limited to only governmental affairs in her afternoons after elementary, middle school, and now the ninth grade. While she was at Canyon Vista Middle School, Catherine was selected as its volunteer of the year from Round Rock Independent School District. Although the school district stated that she collected 5,000 letters, Catherine would make sure to correct the report so we know she only collected about 3,000 and then she did a cookie pack of 1,000 c-rats for Operation Cookie. Catherine, after all, is a leader in the Girl Scouts and honesty and integrity are important to her. Catherine has been a Girl Scout for 9 years and has earned the highest award as a Junior Scout (Bronze Award) and as a Cadette Scout (Silver Award). Catherine is currently working on prerequisites for the Gold Award which is the highest award in Girl Scouting.

Over the years, Catherine has also been active in Austin Adoption Day, an annual event of the Austin Bar Association, Child Protective Services, CASA of Travis County, and other affiliated organizations. Being a proud “big sister” to Anna who was adopted, Catherine helped collect toys for several years for the children being adopted at Austin Adoption Day, as well as throughout the year in Austin. The Austin Bar Association recognized Catherine in its February 2006 edition of the Austin Lawyer for her efforts. Another year, Catherine selected Austin Adoption Day to receive gifts at her birthday party. Catherine’s family has a tradition that if she or her sister want a large group of friends to come to a birthday party, they choose a charity to receive the gifts. Catherine and her sister love the idea and the charities are certainly happy, as well, because Catherine and Anna know they have received a lot of blessings already. Catherine would likely tell you that she wants to help children who are less fortunate than herself. With Catherine now in high school, her leadership is growing in the community.

Catherine was selected to be a member of the Youth Advisory Council at Dell Children’s Hospital. Catherine is also a part of Girls Giving Grants, where each girl donates $100 and the group pools all the money together and awards one grant to a charity. This is her age group's equivalent of Impact Austin. Catherine earned her $100 by babysitting last summer. She is also a manager for the Sun Dancers at Westwood and is in the school choir.

Life continues to be much harder for Catherine then most adults, let alone children, regardless of their age. Catherine's serious health problems continue even now, with other complications are on her horizon and even more surgeries likely. She misses school frequently for her illnesses, and for more visits to specialists than can be remembered, who are either trying to address her known issues without certain resolution, or trying to solve other issues also causing her problems still unknown or identified. For Catherine, there may not be a "magic pill" that many of us grew up expecting and wanting - that when you take it, you feel good the next day or next week, and get to go back to playing for weeks, or months, or years. For Catherine, her life will likely always be much harder than most others.

My own health struggles over the last several years have taken a toll, not from simply any individual condition, but the lack of those long periods where I could simply relax, enjoy life, and be. The mental toll on myself has been tough at time, and my struggles has been relatively short term and less serious when compared to Catherine's. However, I try to take courage and strength from knowing that there is a young woman out there, who since the age of 5, has carried more struggles than I may ever know. I also hope that she understands that the world is cheering her on, sending her love, and that she is not alone for she dwells in the hearts and hopes of not only those who knows her, but also those that read this story, or otherwise hear about her amazing courage and spirit.

Catherine, I think I speak for countless people beyond the boundaries I can easily describe, who would tell you, in the words of Bette Midler, "Did you ever know that you're my hero?" You are.

UPDATE:  In 2012, Catherine was recognized by President Barack Obama for her volunteer activities.  For the President's Volunteer Service Award, she performed 284 volunteer hours.   She also participated in Mark Strama's Leadership Academy and was able to meet Sarah Weddington, with whom Catherine is photographed above.  Through her activities, she continues to be increasingly known in Austin and elsewhere for her exceptional character, leadership and intelligence.

References: http://www.ccfa.org/about/news/localherowinners04 http://www.ibsgroup.org/forums/index.php?/topic/89111-law-grants-restroom-access-peace-of-mind/ http://www.statesman.com/blogs/content/shared-gen/blogs/austin/legislature/entries/2007/04/10/kids_lobby_house_members_on_gutsy_issue.html http://www.chron.com/disp/story.mpl/front/4984060.html http://www.lrl.state.tx.us/scanned/hroBillAnalyses/80-0/HB416.PDF http://www.revolutionhealth.com/blogs/gastrogirl/posts_by_category/digestive/ibs-irritable-bowel-syndrome http://www.roundrockisd.org/index.aspx?page=3668 http://www.austinlawyer.org/sample.pdf http://www.childrensaustin.org/cmcf/files/magazines/miracles-winter10.pdf http://www.girlsgivinggrants.org/

Remembering Lori Tullos Barta (ABA)

Lori Tullos Barta (Posthumous)
2011 David H. Walters Community Excellence Award
Austin Bar Foundation
To be awarded Jan. 29, 2011
Four Seasons Hotel, Austin

For those who might like to know, my friend Lori will receive the above award from the Austin Bar Association posthumously on January 29, 2011. For people who would like to read the nomination that was submitted by so many, I have found a way to post it here. For more information about the event, see http://www.austinbar.org/pages/Gala_Main. The text is small, but if you click on the individual pages, they become a little easier to read. Laura Sharp is entitled to a large portion of the credit for organizing and drafting this eloquent nomination. Thank you, Laura. Shannon Meroney also helped a lot with the nominations, so thank you, Shannon, as well. When Lori was transferred to Seton Main, Shannon was a huge help in making sure that the Seton staff gave her extra special care.

Addendum: I have posted an additional tribute email to Lori at http://www.youtube.com/watch?v=GS-2_AjIWIY. Additionally, I will be posting a video from the Austin Bar Foundation Gala on YouTube so check back here for that, as well.

Addendum: The Austin Bar Foundation Gala video is at: http://www.youtube.com/watch?v=Vwqp55lAIQk

Ways to Honor Lori Tullos Barta - "Lori's Wish" Issue #1

Because Lori Tullos Barta was so loved by so many, there will be many efforts to honor Lori and to sustain and spread her mission in life. Since I want an easy place for people to check as a central spot, I will be periodically posting information that is forwarded to me for that purpose.

I will call this "Lori's Wish" in reference to the statement that she made when Hannah was born. Lori wrote, "When I strip away all the misplaced expectations and get down to basics, my wish for [my children] is this: (1) That they will be HAPPY; (2) That they will know they are LOVED and love others; and (3) That this world will be a better place because they are a part of it. So here I take the first step in trying to ensure that others love and value our children (and all children) as much as we do . . . When it comes to the TRULY important things in life, we need to start valuing individuals – with all their assets and limitations – and stop placing labels on our children! It has to start somewhere if we want this world to be a better place for them." (See my prior post on August 26, 2010 for her complete message in her homily).

From my last conversation with Lori, I also know that Lori's concern for Hannah's long-term care was a paramount issue with her at the time of her death. By helping DSACT, you honor her wish and you ensure that Hannah and children like her will have the best advocates for their cause, now that Lori is no longer with us. Adam Barta and the Tullos family have both consistently directed people to DSACT as a way to honor Lori, so you can be confident that the family would appreciate these efforts.

There are three areas currently that you can plug in to DSACT:

1). the DSACT Calendar event this weekend (Sept 11th),
2). Volunteer fair information (Sept 14th),and
3). the Buddy Walk Team for Lori and Hannah (Walk is on Oct 24)
(More details on each below)

I will tell you that the volunteer leaders, parents and families of those at the DSACT loved Lori as much as anyone did, and will be people you can share and hear great stories about Lori. You probably will create great new memories of Lori that you will cherish from those stories, and find great new friends, as well. I know I have.

DSACT CALENDAR 2010: SHARE THE PASSION

We wanted to invite you to our Down Syndrome Calendar Gala
Saturday, Sept. 11, 2010 from 5:30 to 8:30pm
La Paloma Event Center (off RR 620 in Lakeway)
Free event, drinks, appetizers, musical entertainment
http://www.lapalomaevents.com/contact/map-directions/

It's our Red carpet Gala that kicks off our Celebrity Calendar, which features Downs children with Jeff Bridges and other notable celebrities this year. Please consider buying the calendar for yourself and it makes a great gift for people. The event will also be having a small speech about Lori. Terri Gruca, KVUE news anchor will be hosting. I'm hoping you can attend on Saturday. Please invite your friends and family. http://www.dsact.com/DSACTcalendar.html

Stefanie Visnich Martinez
Down Syndrome Association
--

VOLUNTEER FAIR in Honor of Lori Tullos Barta

Tuesday, September 14th, at 7pm
McFadden Auditorium (back half),
Seton Medical Center
1201 W. 38th Street
(Enter Ground Floor from the Parking Garage)
http://www.dsact.com/lori/index.html#volunteer

For our new and old friends inside and outside of DSACT who want to help DSACT and honor Lori Tullos Barta –

Please come and learn about our areas of need: Open positions, Critical tasks, Short-term and long-term projects, Buddy walk teams in honor of Lori

DSACT needs more hands and hearts to sustain our organization and to lead and continue our current programs, especially those built by Lori. If your family benefits from these programs, if you are Lori's friend and want to be part of her legacy, please come by and sign up! Thank you! Questions? Email linda.kirkland@dsact.com

Suzanne Shepherd
President, Down Syndrome Association of Central Texas
--

"BANANAS FOR HANNAH AND LORI" Buddy Walk team 2010

Below is the link for "Bananas for Hannah and Lori" Buddy Walk 2010. This year's Buddy Walk will be dedicated in memory of Lori Tullos Barta on October 24, 2010 @ the Reunion Ranch in Georgetown, TX, from 12noon - 4pm. We will be working on T-shirts for our team (more info to follow). If you cannot come out to walk with us, please support our team with an online donation.

http://www.active.com/donate/buddywalk10/bananas4hannahandlori

Cyndi Tullos Russell
Lori's Cousin

Note on Buddy Walk: For those that are interested in making an order of the shirt that Cyndi is doing separately for Lori's family and friends for those attending the Buddy Walk, you will want to contact me at jtparsons8@earthlink.net and I can determine the best way for you to obtain a shirt that is designed for Lori's team. James.

How to Better Integrate New Dogs in a Home.

I had previously posted this in Serena's adoption page, but figured it was worth posting separately as well. These are tips of integrating dogs from the "Parsons Dog Handbook." My family has adopted many dogs over the years and these are some thoughts that might help others be more successful at that.

If you are determining whether a dog will accept a new household with existing dogs and vice versa, consider trying the following steps. While these are not exhaustive tips on integrating dogs, they really helped with Ginger when my parents took her. Please consult dog behavior books for further instruction or consult with dog professionals in your area for assistance if there is any doubt. Special care should always be applied so that none of the humans, dogs or other pets are injured.

1). Let them meet in neutral territory - take them for a walk.

Let the dogs meet for the first time near the final home but where neither sees it as their "territory." Have the current masters walk each dog, and then start walking side-by-side toward the final destination (the new home, or even the new owner's car, if in different cities). If there are multiple dogs in the new home, a separate person should walk each dog.

The goal is to walk them until they are all just really tired and end up at the new home/new car. Let them sniff briefly initially, greet, and then repeatedly for brief periods along the walk, but keep them moving on the walk - which is their common task.

Let the environment be casual as possible, "non-eventful" since that will tell the dogs they can be relaxed too and enjoy the walk. As they start sniffing stuff together they might begin seeings themselves as a pack - and dogs are naturally pack animals. If they get too assertive with each other on any of the greetings on the walk, pull them apart for a few feet, keep walking forward, and then try to see how they later walk together. Let them greet again later, each time briefly and casually, with each master having strong control over their own dog.

Any inappropriate actions can be met with a strong, "No!", but then forgotten and keep them walking. This will help the dogs develop familiarity with each other, and allow the masters to determine if the dogs can ultimately live together. If the walk goes well, then the end result is that the dogs end up at their new home/car. All the dogs should be "dog tired" at the end and then give the dogs all water. They most likely will simply lay by each other and that will show some how they will interact - and if they will accept each other.

2). At the new home or the new owner's car, let it be casual with the existing owners/"parents" so that the dogs still get signals that everything is causal and fine.

If everyone is at the new home, have the old owner come in as well, so their dog doesn't understand at this point there is a shift in ownership and will feel more comfortable with the home. During this process, the owners may at times shift leases so they are holding the other's dog and that will also tend to convey to the dogs that everyone is friendly and there is no need for concern.

If these efforts don't allow the dogs to be relaxed and there is any consistent, high level of aggression between them - particularly when they are tired, then it may show that the effort may not work - or needs professional efforts to try to start the integration of the dogs. Each person holding a dog's lease should be comfortable exercising dominance over the dogs so that the true "alphas" are understood to be the people.

3). The Dirty clothes 'trick' can help with a crate.

Once the old owner leaves their dog, one idea that can help their dog transition into its new home is to also give a bag of dirty t-shirts/towels that belong to the old owners and have not been washed. They will have the scent of the old owner on them and can help comfort a dog if the pet seems sad/lonely when the old owner is not around. It can often be helpful for a crate also to be used as a place for the new dog to sleep, so he/she may sleep apart from the other dogs. Ideally, the crate door should be left open initially so the dog does not develop a negative impression of the crate. The old master's dirty clothes can be put in the crate as bedding, and allow the dog to feel safer as they adjust to their new home.

If the crate with old clothes is used, the new dog may be territorial of it if the other dogs enter the crate since the old master's scent is in it. In such instances, take care when other dogs are allowed in the area. The crate might be placed in a separate room, with the crate door left open for a long while. Once the dog goes in there, and the dog often will feel safe, so the door can be shut later on. In time, the clothes can be taken out in a day or two so that the dog starts bonding with the new family.

4). Separate at feeding/sleeping/alone times.

Food aggression is one of the most common reasons for flare-ups with a new dog and the existing pack. The dogs should be separated at feeding time until the pack's roles are clearly defined and accepted. Dogs should also be separated in a similar fashion when they sleep or are alone without supervision.

Over time, allowing the dogs with supervision to interact can allow the roles to be defined. Care should also be shown when dogs enter buildings, if one is allowed on furniture or in special places, and when loaded into a vehicle. These are all things that show alpha status and the dogs will have to work out these issues somewhat among themselves - with parents around to ensure it is done safely for all pets.

5). Special care with particularly smaller pets and cats.

With a new dog in a home, special care should be taken to determine if prey aggression will impact birds, cats, and other smaller animals, even small dogs. With such size differentials, it can be dangerous since the smaller animals will not be able to fend off an assault. If the new dog attempts to show any aggression with the smaller "prey," then likely the owners need to understand that this may never stop. For at least small dogs that are sufficiently aggressive themselves (many terriers), the danger may be less since they may be able to protect themselves.

However, with cats specifically, they may not be safe with any prey aggression. If the cat is declawed, then the cat must be protected at all times. Understand that the cat's only remaining defense of biting is INSUFFICIENT since cat jaws are very delicate and that the cat is at serious risk of a jaw fracture if they have to defend themselves against a dog.

Again, these are not exhaustive tips, but can be helpful.

Connect to the The Thirst Project

As a sign that 20 somethings and Gen-Y are thinking globally in a way that prior generations have not, Seth Maxwell at 22 yrs old and the non-profit The Thirst Project, that he founded at 19 yrs old, are showing that any person in the U.S. can impact global poverty. He has engaged many around him to follow his leadership and has even succeeded at getting several "Glee" stars and other young people in Hollywood to step up and help.

http://www.thirstproject.org/

Seth's passion for this area is impacted by the fact that he knows 1/6th of the world's population have no clean and sufficient water to drink. With the water sources that many do have, disease and other contaminants pollute what water that they can drink. While the efforts of Seth's non-profit, he is helping to educate Americans on the issue and how they can impact the problem globally. Recently, Seth had his Annual fundraiser in Hollywood, hosted by “90210” star AnnaLynne McCord (seen above with Seth Maxwell) where Harry Shum Jr. ("Mike Chang"), Heather Morris ("Brittany") and Naya Rivera ("Santana", seen below) of "Glee" also participated.

See http://marquee.blogs.cnn.com/2010/06/30/glees-thirst-for-doing-good/. See also, http://www.gleetastic.com/gallery/naya-heather-and-harry-at-the-inaugural-thirst-project-gala.

http://www.youtube.com/watch?v=bI_G4dW6OHU&feature=related

http://www.youtube.com/watch?v=TVjGX_nqCAI

For those in Texas, Seth will be coming through the State in mid-September 2010 to try to find new people to connect to this non-profit and its collaborative efforts with similar non-profits. His primary focus is to connect to college, high schools and middle schools students to whom he can present his educational program. Additionally, others in the community interested in hosting a presentation, or meeting with him, such as those in the environmental movement here, ought to also let me know.

Feel free to email me at jtparsons8@earthlink.net and I can relay the information to Seth so that he can go through those interested and determine his itinerary and other ways he may be able to engage those interested. You are also welcome to "like" the Thirst Project on Facebook and look for Seth there.

Lori Tullos Barta

July 24, 1971 - Aug. 19, 2010
(Funeral Aug. 24, 2010)

Lori lived only 39 years on this earth, and in that time she was able to have significant impact on both individual lives in it, and on broader issues of the world - particularly the need of individuals with learning disabilities and down syndrome.

Lori's impact, though, is not at an end - since she will continue to live in the hearts and minds of those that knew and loved her, those that knew of her in her life, and those that only learn of her after her passing and still miss her now. As one of her apostles, I can give testiment to that fact that I am who I am as a leader, and in many ways as a person, because of the impact Lori had in my life as one of my closest friends.

From about 1997 to 2005, we were very close friends and during that time each of us married our spouses (she married Adam in 2001, and I married Heather in 2003). I did her bridal photography, and that was such a great day. I proposed to Heather with Lori's help in rigging a "White Elephant" at Lori's Christmas party in 2001 for me to surprise Heather. Our wedding anniversaries are in fact one day off each other. But as with life when each goes their own way, and takes on their own responsibilities, we had less time together as close friends in later years. Both Lori and I acted as President of a local non-profit for 2008 and 2009 - I with YouthLaunch and she with Down Syndrome Association of Central Texas (DSACT), she had 3 children (one with down syndrome) and I had my own serious health problems including miraculously surving sepsis in 2008, and surviving a serious fall in 2009. We were not able to talk as much in the last 5 years. Through Grace, though, we were able to reconnect in Feb. 2010 and made an effort to periodically talk through July, 2010. I had lunch with Lori when her heart problem was first diagnosed and I am glad that I was able to tell her then how much she had impacted my life, and that I loved her dearly. As someone who does credit her for my ability to have impact in the world, I want to make sure others know her story, at least in part.

For those that don't believe I once was an introvert and shy, I was. Lori was one of the main reasons that I am not now. She had a gift of seeing people for whom they could be, for their possibilities when others would write them off, and not simply seeing them for whom they appeared to be. She provided the understanding that people need to feel included and cared for, and she would invite them into her large social circle, and then engage them and lead them to have social impact. She did not do this in so many words, but would make you think you were doing it only because it was good for you, all the while she wanted you to be part of the change that she foresaw. She did this with the Austin Young Lawyers Association, with DSACT, and many other groups. And more importantly, in her wake she has left a virtual army of leaders all shaped and impacted by her own leadership. These leaders independently are doing similar good work, but more importantly we are now going to help ensure that Lori's mission in life does not end with hers, but will continued well into the future, in her memory.

The story of her death is documentated online at her journal site, where the first entries were her own. http://www.heart-valve-surgery.com/journals/user/lorib. After she went into surgery on Friday, August 13, 2010, the entries were then from her husband, Adam, and her step-mother, Susan. So many people were monitoring the journal through her last days that the entire website crashed for over a day until they could upgrade their servers and system. Many of her family, and friends from DSACT and other parts of her life, stayed with Lori 24/7 in the hospital and many more stayed in the ICU waiting room through the week so that she was never alone. From my time in the ICU waiting room, I learned that many of her most special qualities were in fact "Tullos" qualities, made part of her by a family that grew from 10 siblings, her father being one, and currently has 80+ awesome members. I also saw the great bond that exists between Adam and his brother, Mark Barta, and the special qualities that the Bartas have, as well.

For those unable to be at the hospital or have direct information from those who were, the journal was often an agonizing process of constantly checking for updates - "how is Lori doing? nothing is posted." Early on, no news was good news since nothing bad had to be reported. Later on, no news was bad news, and most knew it.

What the journal will also tell you is Lori's "Story" that she was not aware of any serious health problem until a few months before her death. She progressively realized that she had some sort of heart issue, and they determined over several weeks (a few prior to her death) that it was a severe mitral valve regurgitation, and that she would need surgery much sooner ... in a matter of weeks. Having to decide location and exact type of surgery, she decided to have a doctor perform the surgery here in Austin, Texas, at the Heart Hospital.

The method of surgery was originally only supposed to take 3.5 hours, but that time quickly passed and Lori was still in the operating room, and her family and friends became more concerned. The surgical team could not get her off heart bypass and get her heart to restart, and they had to open the chest cavity and perform a full open heart surgery to try to get her heart restarted. After 12 hours, they had her on a ventricular assist devise (VAD), which was a term her friends and family became way too familiar. In the following 12 hours post-op, as Lori fought to live for her husband and 3 young children (again, one of which has down syndrome), Lori had another 6 hours of surgery in 2-3 periods, as the surgical team tried to keep her at all stable, albeit still critical in ICU. Lori had told me that her biggest fear was that her children would grow up without a mother; Lori's own mother died when Lori was in her mid-teens.

The days after showed periods of improvement, although she never came out of ICU or regained consciousness, and the moments of improvement of any sort were rare and fleeting. In that time, Lori experienced cascading organ failure - from kidneys, to liver, to Disseminated intravascular coagulation (DIC). Lori continued to fight for life even then. Because the Heart Hospital is not equipped to deal with such complex issues following heart surgery, she had to be transferred to Seton Main (Seton Medical Center on 38th Street, Austin) a few blocks away. Seton was amazing to the family and treated Lori as a VIP. At her transfer, though, the concern became more that her pupils were fixed and dialated, which could indicate brain damage. At Seton Main, her EEG showed that she was flatlined with no apparent brain activity. The next day the CT scan showed definitively that she had suffered at some point from multiple strokes and had severe swelling of the brain, which would be unable to sustain life. Our Lori was brain dead. Lori's was only being sustained by a respirator and the VAD, which were then turned off a few hours later. Lori was gone and the countless people that loved her remained.

So that there is a documentation of the sermon given at her funeral, I thought it was important to post it in this blog. It is so moving and I hope finalizes the story of a woman who is very much loved still. I hope you who read this will help share her memory and her story, to ensure that others are inspired to be better than they believe they can be. http://hosting-tributes-24744.tributes.com/obit_photos/add_photo/89189386

From: The Rev. Kelly Koonce
Homily for the funeral of Lori Tullos Barta
Lamentations 3:22-26, 31-33
2 Corinthians 4:16-5:9
John 14:1-6

“[God] does not willingly afflict or grieve anyone” – so the author of Lamentations assures us. But that is not to say that affliction and grief will not come. There are many things that God does not will – suffering and death chief among them – but they are ours to bear nonetheless as inhabitants of this curious creation, this world, this life – so gorgeous and yet so dangerous, so vigorous and yet so frail. Death is a part of life. We know this. Nothing and no one escapes it. Yet, when death comes, it always seems to take us by surprise – not the fact of it, necessarily, but the force of it. When it comes out of place and out of time, it is doubly shocking. It leaves us stricken, short of breath, with puzzled minds and broken hearts.

Lori Barta died too soon. It is not sensible. It is not fair. Why do we have to be here today, doing this, of all things? How did a routine surgery turn to tragedy? What went wrong? I wish I knew the answers. But I’m not sure they would really make a difference. I’m not sure they would serve to blunt the pain.

What I do know is that Lori lives now in God and God lives in us, which means that she is not as far from us, nor we from her, as we might imagine. What we are grieving is not a relationship that has ended, but a relationship that has changed. Lori’s light has not been extinguished. It continues to shine in the life of her family, in the lives of her friends, in the lives of all of us gathered here and countless others far beyond these walls. Just as Lori burned on this earth with an unrelenting passion for justice and mercy, with a seemingly boundless and indiscriminate love for all sorts and conditions of people, so she continues to blaze, like a newborn star, deep in the heart of God.

The early Christian theologian Irenaeus of Lyons famously wrote that “the glory of God is the human being fully alive.” When I hear that quote, I think of Lori. I did not have the privilege of knowing her personally. And yet, I feel I have met her, in a way, in the lives of those family members and friends with whom I’ve journeyed over the past week – in Adam, Emma, Hannah, and Sarah; in Gerry and Susan, Michael and Erin, Cyndi and Jennifer. And the woman I met in their eyes, in their words, in their laughter, and in their tears, was truly a force of nature. Precious wife, adoring mother, beloved daughter, sister, cousin, and friend, skilled attorney, tireless advocate and activist – Lori devoted her life to improving the lives of others. In 2008, she received the Distinguished Service Award from the Mayor’s Committee for People with Disabilities as a result of her work with the Down Syndrome Association of Central Texas. First as a committed volunteer and then as president of DSACT, Lori worked ceaselessly to raise awareness of the unique challenges facing those with mental disabilities in general and those with Down Syndrome in particular. She developed an Educator Manual and training program for teachers of children with Down Syndrome which remains in use throughout area school districts. She led efforts to educate parents of special needs children, helped develop an Inclusive Congregation Campaign for faith communities, and worked to train healthcare providers to care more effectively for individuals with Down Syndrome.

It is one thing to have faith. It is another, and more difficult thing, to live it. It is one thing to believe the gospel. It is another to embody it in our lives. Lori Barta was a living proclamation of the good news of God. She incarnated, daily, the gospel imperative to reach out to and care for the downtrodden and the dispossessed, the left out and the left behind. As Adam put it, “It was almost as if [Lori] was destined to have a child with special needs,” because she had always reached out to those whom most of us would choose to avoid. Her particular passion for improving the lives of special needs children was born with her daughter Hannah. From the outset, Lori refused to accept the negative assessments and bleak predictions for the future that she and Adam received from so-called experts in the field.

Following a particularly disappointing meeting with a geneticist not long after Hannah was born, Lori composed an email, a manifesto of sorts, to her family and friends. In it she wrote: “Bottom line, [the expert] said, is that there is no cure and Hannah will never be ‘normal.’ We walked into the meeting with hope and came out feeling numb and apprehensive about the future. Well, I refuse to accept that (gee, Dad . . . guess my stubborn streak came in handy after all!)! And that has led me to this 4 a.m. e-mail to you all. What is ‘normal’ anyway and why is that something to strive for? What is it that I really want for my children? When I strip away all the misplaced expectations and get down to basics, my wish for [my children] is this: (1) That they will be HAPPY; (2) That they will know they are LOVED and love others; and (3) That this world will be a better place because they are a part of it. So here I take the first step in trying to ensure that others love and value our children (and all children) as much as we do . . . When it comes to the TRULY important things in life, we need to start valuing individuals – with all their assets and limitations – and stop placing labels on our children! It has to start somewhere if we want this world to be a better place for them.” The rest, as they say, is history. The rest is passion. The rest is fire. The rest is gospel.

In the biblical understanding, the saints are all the people of God. I am a saint and you are a saint because God’s Spirit dwells within us. But later Christian tradition narrowed the definition somewhat, defining saints as those whose unique holiness of life was worthy of emulation by others. I think it’s safe to say that Lori was a saint in both senses. Of course, she was not perfect. She had her faults and her foibles, just like the rest of us. But the path she cleared is well worth following. The road she paved is well worth traveling. The life she lived is well worth emulating. If Lori could speak to us today, I believe she would tell us to continue what she began. Stoke the flames, tend the fire, shine the light, keep up the fight. When you encounter someone who is differently abled, don’t pass by on the other side. Reach out to them, take hold of them, love them, and let them love you. See them for the gift that they are and receive the rich blessing that only they can give.

When I met with Lori’s family on Saturday, Adam, Emma, and I took a walk in the fairy garden, a whimsical retreat that Lori designed for the girls in a secluded corner of the backyard. Adam asked Emma what she would like for me to tell you all about her mommy. Her response was brief and pure: “Tell them I loved her.” As I look around this church today, I am overwhelmed by the outpouring of love for Lori. She was loved so well by so many because she loved so many so well. In the final analysis, that’s what Lori did best: she loved. And I can think of no better testament to a life well lived.

Lori’s favorite quote, her mission statement, if you will, was “the reason we’re here is to leave the world a better place than we found it.” By any measure, she succeeded in spades. This world is truly a better place because Lori Barta was in it – eyes were opened and lives were changed. We can only hope that someday the same might be said of us, that we might make such a difference.

I was going to conclude by saying “Rest well, good and faithful servant.” But I’m not sure that rest is in Lori’s vocabulary. I hope the angels have had their Wheaties, because they’ve sure got their hands full. I imagine that even now Lori is enlisting their help with some new celestial campaign. But before it begins, I can see her gathering the children in her arms and telling them how much they are valued, how much they are cherished, how much they are loved. And I can see God . . . smiling."

May Lori rest in peace but know that her family will be loved by countless people here to help them as they go through their difficult journey and that the rest of us will continue the work she started.