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Alexander Deihl was born on July 13, 1992. He had striking blue eyes and milky white skin. He was beautiful. At 3 months, we felt that he wasn’t progressing like his older brother, Nick, so we took him to a few Neurologists to find a diagnosis. The first Neurologist ran all kinds of tests and came up with no diagnosis. He was stumped. Alex’s pediatrician, at the time, suggested we go to a Neurologist at St. Christopher’s Hospital for Children that specialized in metabolic disorders. As soon as the Neurologist saw him he mentioned to his assistant that he appears to have “steely hair syndrome”. We thought, “that doesn’t sound very bad”. He went on to additionally explain the devastating diagnosis of Menkes’ Syndrome. That prognosis was not encouraging at all. Back in 1992, the prognosis was very grim. He said 5-7 years was his life expectancy. That was shocking news for my entire family to hear.

Once we accepted the diagnosis, we were able to deal with the triumphs and pitfalls. Many pitfalls. He has been through so much that most human beings could never endure. But he keeps pulling through like a champ. He is the most laid back, happy individual I know. He has diverticuli, so he needs to be catheterized every four hours, he has a feeding tube and requires 24/7 feedings and gets around by a wheelchair. He attends school 5 days a week until he graduates next year at the age of 21. He just overcame his latest hurdle and has received a tracheotomy tube. He must be constantly suctioned and is on a ventilator at night. It was a huge step for us to take with him but we believe it’s greatly improved his quality of life.

Although the diagnosis was devastating at first, we have tried to maintain a normal life for both he and his brother and he is one of the happiest people I’ve ever met. He’s the love of my life.

 

Jackie



Posted: July, 2012

 
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