It's been an interesting few months here at Chez Jumonville. In December, our first granchild, a delightful baby boy, Walker Jumonville aka Walker Texas Baby, was born. Texas had, a year ago, instituted required blood testing at birth for 29 different conditions that are not obvious to regular exams.
Ten days after he was born, we discovered that Walker had SCID (Severe Combined Immunodeficiency, aka SCID. You perhaps know this better as Bubble Boy disease - his immune system is almost non-existent. We were vaguely aware in the back of our minds of this condition as something very rare that happened to other people. Now we not only know more about it than we ever wanted to, but I think everyone should know about it, in part because while it's said to occur only once in 100,000 births, we don't really know, because deaths are from common illnesses that the immune system can't fight and are often attributed to that.
Walker and his parents spent 3-1/2 months in the hospital waiting for a blood marrow donor (blood marrow transplant currently being the treatment of choice, though studies are currently going on involving gene treatment). During that time he had an IV that, in essence, went straight to his heart, and he was always attached to it. His parents traded off time in the hospital with him, and his Dad, my son PJ, was able due to an awesome employer and the nature of his work to work at home so that he would not be exposed to anything that could be conveyed to Walker with perhaps fatal results. And through it all, Walker remained the happy, cheerful baby that he was born to be.
The transplant went well, and while he's not entirely out of the woods, he was allowed to go home recently.
Please, consider being a bone marrow donor. The process is much different than it used to be, so don't let that scare you. You can find more information on SCID at the SCID home page
This is also a very expensive disease, even with insurance, and the expenses are ongoing for a long time, not counting such things as lost income and special accommodations, etc., that need to be made for a child who has or is recovering from SCID or expenses for the parents if travel to a hospital in a different city is necessary. A fundraiser exists for Walker to help out with some of these, which is linked below and is ending tomorrow, Thursday, May 29.
http://www.gofundme.com/8rwyvo
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