About
Haley Jennifer Well, born with a very rare genetic/congenital blood disease. In medical school terms, it’s Congenital Amegakaryocytic Thrombocytopenia (CAMT). In plainspeak, it’s the bone marrow’s inability to produce one of the blood cell lines, platelets. Haley was diagnosed at approximately 2 months. It’s two years hence, and what a ride it’s been. Disease-free, still a host of unknowns, Haley shines through it all, giving everyone the strength and happiness to fight on. According to Memorial Sloan Kettering where she had the transplant (and continues with their bone marrow and long term care team), Haley was case #16. This blog has met more cases, though the condition is still so rare. Please pass this along to anyone who might need anything– information, support, a joke or two. The stress of watching a child suffer while having to remain as calm as a pond ripple requires extraordinary balance and a tremendous support system. I hope this blog helps in some way.
Hi-
I came across your site and wanted to share with you a book I had the honor of writing and I think you will really enjoy reading to Haley.
Super Stemmys – Doris and the Supercells
For more information, go to https://www.createspace.com/3391680
Regards
David
September 3rd, 2009 | #
Hi I too have a daughter who has camt and what a rollercoaster we’ve been on Sara is 4 and was diagnosed 20 months ago. We two have been in and out of hospitals since birth but Sara is a wee fighter. I have been looking for information about this condition since diagnosed and thankfully came across your website by acident and it’s good to know that your daughter is doing well she looks like a little princess!!!
February 24th, 2010 | #
Hi Donna:
I’m so glad you found haley’s giggle. i’ll email you privately, but let me know if there’s anything i can do. I don’t know Sara, but the CAMT kids that i’ve met are all incredibly strong and resilient, not to mention ridiculously cute! love, jordana
February 25th, 2010 | #