LEO WESTWIND MEDICAL FUND

February 1, 2008 A huge "Thank you" to all those who've been following Leo's story. Free Geek and Leo's family have received a huge amount of encouragement in the form of letters, emails, caring questions, offers of housing, and money.

Leo received a liver transplant during a 12-hour surgery on December 18, 2007. He seems to be doing well. Here's his Mother's latest update.

Leo is doing GREAT! He continues to amaze and impress the doctors up here with his speedy and steady recovery. He is doing so well that, exactly one month to the day after his transplant operation, he was able to leave the hospital and join me here at Ronald McDonald House!

So far his new liver is settling in nicely, with no signs of rejection (knock on wood). He currently needs to use a wheel chair, due to a combination of loss of muscle mass during his months in the hospital, and nerve damage caused by his belly being sliced from one side clear across to the other. The long hospitalization led to contractures (a tightening of the tendons) in his legs. This loss of mobility is a real adjustment for him, after being such an active kid, but he is working very hard with a great team of physical therapists who come to Ronald McDonald House every single day, and they are very optimistic about his chances of making a full recovery. The therapy includes all kinds of athletic activities, through which he has found a number of sports he very much enjoys. In addition to looking forward to rejoining his friends in the cycling community, Leo is also campaigning to have a basketball hoop installed at home, and he wants a ping pong table as well!

He is still on a feeding tube, which he hates, but is necessary because he has no appetite at all. Like many transplant patients, he lost his appetite as his liver was failing, and has yet to regain it. But thanks to the tube, and the micro amounts of really great organic food he is eating, he is gaining weight as well as muscle tone, and is looking healthier every day. The docs promise that he will eventually get his appetite back.

While Leo's made it through a very trying time, he's not out of the water yet. The two biggest issues for kids post-transplant are the risk of organ rejection and the risks associated with immune concerns. The drugs Leo takes to ward of rejection depress his natural immune system, leaving him prone to infection. Over time he will be able to reduce the number of medications he is on, and with luck be able to adjust the remaining prescriptions to find a balance between fending off rejection and fending off infections. Within a year or two of transplant, most patients are able to get to where they are taking only a couple of pills each day. Leo's prognosis is very good, and his rapid recovery from surgery bodes well for a speedy recovery to the cycling community he so loves, and a long life of pedaling in the future!

At this point, the hope is that I may be able to bring Leo home in time for his 13th birthday (March 5th), at which point he will still need to come up to Seattle on a weekly or every-other-week basis.

Due to an amazing response to this fundraiser, Leo's family has received over $18,000 so far! Kyr and Michael are overwhelmed. These donations have helped Michael rest easier at work and travel to Seattle as much as possible, and allowed Kyr to stay with Leo non-stop for the past 3 months. In particular, Leo's family wishes to thank the following people and organizations:

Free Geek (Free Geek says "You're welcome!"), Greg and Saturno Design, ReRun (a NE Portland thrift store that collected hundreds of dollars for Leo), Resource Revival, Cheryl & Mark at Brown String Solutions, Redwing Coffee and Baking, SCRAP, Mirador Community Store, People's Food Co-op; Citybikes, Jonathan Maus and BikePortland.org, SHIFT2Bikes/Zoobomb/Portland's cycling community, Meadows Group Realty, Center For Natural Medicine, Brent Carter, The American Liver Foundation, and of course all of the wonderful individuals who've offered time, letters, housing, funds, and love to Leo and his family.

While donations so far have supported Leo up until now, he and his family are still facing huge hardships within the next year. In the next 8 months, they will likely need to pay over $20,000 for medical bills (insurance will not cover Leo's continuing care in Seattle), transportation, food, and lodging. Leo's family still needs your help!

There are many ways to make a donation to Leo's Fund:

• Click on a "Donate" button at the top of bottom of this page.
• Make a donation by mail or in person to any Umpqua Bank branch. Make your check payable to "Leo Westwind Medical Fund".
• Make a tax-deductible contribution to Leo's Fund with the American Liver Foundation
  • By mail: Make your check payable to the American Liver Foundation Transplant Fund. Write "Leo Westwind" in the memo line of the check. Mail your donation to "American Liver Foundation; 1425 Pompton Avenue; Cedar Grove, NJ 07009-1000".
  • By phone: Please call Joan Gallagher at 212-668-1000 ext. 224 and be ready to provide a valid credit card number.

For future updates on Leo and his family, check his Mother's blog.

For more information regarding Alagille Syndrome, visit one of these links:
http://en.wikipedia.org/wiki/Alagille_syndrome, http://www.emedicine.com/ped/topic60.htm, or http://alagille.org.

Contact:

Shawn Furst
Free Geek
(503)232-9350x226

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