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Aug 15 2013

My Baby Idan’s Fight to Live

By at 9:55 am

baby idanI had a dream the other night; it was vivid and frightened the hell out of me. My son was on a table, and his body looked like a roasted chicken. He was crying because there was a doctor behind him pulling his chicken limbs off, one by one. I screamed and cried with my son, but had no power to stop or reverse his pain.

This dream is crazy but perhaps painfully understandable when you consider my history. Four months ago, my son Idan, who was 8 months old at the time, was rushed to ER because his respiratory rate had increased to a speed of 80 times per minute and he was panting like a dog. Obviously, something was wrong, but we had no way of anticipating what would come next.

We spent three weeks in the pediatric ICU with Idan hooked up to a ventilator and half a dozen tubes and IVs. He had contracted PCP, a rare form of pneumonia and was being treated for it, yet on the day he showed signs of recovering, the doctors came to deliver worse news. “Your son has a severe immune deficiency disorder, but we don’t know what it is yet,” they told us. Weeks went by until we had a diagnosis: Hyper IgM, also known as a CD40 Ligand Deficiency. Okay, it was worse than that: it was X-Linked Hyper IgM, meaning it was passed down through the mother.

Take a moment to digest that one. It came from me. Read the rest of this entry →

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