Introducing some of our JMML Children...
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William was born on June 7, 2005. At three weeks of age, he broke out in a horrible rash that covered his face, arms and legs. After a few weeks of testing and hospitalizations due to fever, we were given the diagnosis of Sweets Syndrome, a relatively rare skin disorder that rarely affects children, much less newborns. Sweets Syndrome is also often seen when there is a malignancy present, but none could be found.
At the age of 4 months, we moved and were seen by a new dermatologist in hopes to help his Sweets Syndrome. Since she had never seen him before, she felt better having him admitted and run her own tests. Luckily she did, we found out his counts were all over the place, his platelets were dangerously low at 7, his whites were 40,000. After 3 weeks of testing the doctors came to the conclusion that he had JMML. He presented differently however, and his tests were abnormal, but only borderline, so they wanted to wait and see how he did. We gave them a year, and after the doctors were not feeling confident about their diagnosis, we made the decision to move yet again and get another opinion.
; This time, it came back quickly, and as we knew, he had JMML. We were set to go forward with transplant 2 weeks after we met with his new doctor. A series of infections delayed us briefly, but we finally managed to get his bone marrow transplant, courtesy of his sister, on March 29, 2007. He has amazed us with how well he is doing. He did have a severe case of skin GVH, but it cleared, and he continues to do well now. He was very malnourished before, the leukemia was basically starving him, and since transplant, he has put on 4 pounds! His Sweets Syndrome has also vanished, though that could still reappear, we are thankful for the days of good health. He has a 5 year old sister who was his donor, and an 11 month old brother who inspires him to eat, and play all day.
mom to Emily(7/01), Will-JMML(6/05), and Jacob(6/06)
Check William's web page
for updated information.