I have a dream!
I’m calling it the International K-T House & Mentor Program*.
So many parents first learn of Klippel-Trenaunay Syndrome when their child is born with it. Those moments are often frantic moments, particularly for parents whose children are born looking very different from the picture they had in mind. Making this experience even more traumatic for K-T parents is the stark reality that so little information is forthcoming from the doctors who guided their baby into the world.
K-T parents need a regular, straight forward program that gives their child ready access to K-T experienced vascular surgeons, intervention radiologists, and the like. This kind of program needs several components to be successful. These are:
- A Mentor component which would be a K-T parent and/or K-T adult. It would be great if these Mentors were to also have first-hand experience with a similar form of K-T as to the child being supported.
- A medical community that caters to the Klippel-Trenaunay Syndrome patient community delivering a flat-rate diagnostic regime/program. This program would at least assure the parents that K-T experienced doctors are able to do initial diagnostics and map out a strategic medical care program for the child, even if this includes partnering with the child’s pediatrician and so on.
- A K-T House component that opens our homes to new parents seeking short-term stays while undergoing scheduled diagnostics at a nearby K-T medical provider. These folks would likely live near a K-T medical institution. If opening your home is not feasible, then volunteer in a docent role guiding the K-T families to local accommodations, providing them with maps, and possibly showing them to the medical institution on their first visit including handling introductions to your K-T doctor.
I’m looking for creative volunteers to brainstorm the components of this program and to begin encouraging the medical community to work on very concrete diagnostic programs that give new K-T parents an attainable diagnostic regime.
This program is a jump-start on a better life for those kids born with Klippel-Trenaunay Syndrome. It is a non-profit venture which will be staffed by volunteers from our community. Those with funding experience may wish to work on a legal trust or foundation and I’m happy to work with you to set this up provided the outcome directs no less than 95% of donations directly to the K-T parents and K-T kids in need. Existing foundations wishing to partner on this endeavor, please consider this effort a mutual aid program. This is an international endeavor looking for world-wide and world-class partners.
We need your help, please think seriously about joining this effort. If we can save just one set of parents from not knowing, or being compelled to deal with a local medical community that just doesn’t know, we will have done great things.
WilliamAntonLee@wordpress.com is the home of my personal journal which is the anchor for humble efforts to educate new K-T Parents and help our young K-T companions. Please post your ideas and interests here, or if you prefer within the wall posting section of Facebook. I’m new to Twitter and not quite ready to go public with my address yet.
Thank you in advance for your help.
William Anton Lee
AKA: Bill Lee
– – – – – – – – – –
* The International K-T House & Mentor Program ©2011 ®2011