Brian, our oldest son, was a knitter and helped in the store when he was able. We lost him on August 11, 2014. He was disabled by Klippel-Trenaunay Syndrome (KTS), struggling with it for the last 20 of his 38 years. KTS a very rare disorder (fewer than 500 people have it in the US, 6000 worldwide today) and many medical professionals have never heard or seen a case of it. As a result, Brian wasn’t diagnosed until just a few years before his death. Brian’s form of KTS was particularly troublesome and debilitating. It was a genetic condition, but not a genetically transmitted one. It can strike anyone anywhere through a gene mutation following conception. For KTS/Parks-Weber sufferers such as Brian, early diagnosis and correct treatment are essential to achieving anything like a “normal” life. When Brian was a baby, few doctors knew anything about KTS, including the ones who saw Brian. Early diagnosis and correct treatment would have made a huge difference in his life and saved him from incredible pain, seriously limited mobility, and thousands of dollars of medical treatments..
Had we had access to the very few researchers looking into KTS 40 years ago, things might have been different. But there was no Vascular Birthmark Foundation in those days. Twenty years ago the Vascular Birthmarks Foundation (www.birthmark.org) (VBF) was just forming in New York City, but neither we nor our doctors were aware of it. The VBF is the only organization in the US providing support, information, and referral services to individuals suffering from birthmark syndromes like KTS. My husband, Skip, and I started the Brian C. Weber Memorial Travel Fund through the VBF to help provide transportation for diagnosis and treatment for children with KTS and related disorders.
With the knowledge we now have and a referral service for patients needing help with their condition, we believe the travel fund may provide a way to get patients and doctors together early enough to prevent what happened to Brian. There’s still little research into KTS/Parks-Weber. There’s just not enough money at the end of the research road to justify the investment. But there is certainly hope for a better life for KTS sufferers. Perhaps in our small way, we can help them find it. A contribution in any amount will be the most welcome and genuinely appreciated.
All contributions are fully tax deductible as the VBF is a 501c3 charity (Federal ID is 16-1515227). We urge you to send your memorials to:
Vascular Birthmark Foundation
Brian Weber Memorial Travel Fund
PO Box 106
Latham, NY 12110
You may also make your contribution online at: www.birthmark.org.
Please be sure to mark “Brian Weber Travel Fund” in the memo line of your check or in the box on the web page to assure the money gets to the right fund.
We’re also planning store activities to raise money for Brian’s Fund. We’re rebranding all of our store patterns under the name “Brian’s Pattern”. Of the $5.00 selling price, $4.00 will go to Brian’s Fund. We’re planning a Fashion Show for this summer. Check back in a couple of month for details.
We thank you for your generosity and all of the kindness extended to Brian and our family over the years. You each helped to make his life tolerable and meaningful.