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VWM (CACH)

Catherine - posted on 11/03/2008 ( 1 mom has responded )

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Hi there - just wanted to introduce myself and my son Michael who at the age of 18 months was diagnosed with VWM Vanishing White Matter. He was a healthy child up until this time developing normally. Over the winter he got a bad cold and it never seemed to go away it just kept getting worse. He was very lathargic, did not want to eat, drink, walk, or even watch his favorite TV show. I took him to his family doctor who gave us medication for a sinus infection but it didn't work, finally by the end of the week when he still had not improved we took him to Sick Kids Hospital where they did test after test and pumped him with antibiotics. At this time after a cat scan and MRI they gave us the diagnosis. A final blood test confimed it. He is missing a gene in his body that he needs. We have been told that he probably won't make his 10th birthday and will never be able to walk on his own although he tries very hard. We have also been told that he will develop mentally with very little delays but every time he gets a cold or bump on the head he might go into another setback. Each setback will take away his speach and motor skills. I am looking for other parents our there who might be able to help me. I have been told that there are only 200 diagnosed cases worldwide.

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Jessica - posted on 11/03/2008

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While I do not have the same diagnosis I am going through a similar situation. My son Jeffrey, now 2, suffered a heart attack when he was 22 months old. Prior to his cardiac arrest he was incredibly healthy (only one cold since birth) and very advanced for his age. He was fully potty-trained and speaking in full, clear sentences. There is no explanation as to how he survived such a severe heart attack. All of the medical personel are astonished that he is alive. He suffered severe global brain damage as a result of oxygen deprivation during the time that his heart wasn't beating. He can no longer talk, see, hear, or move on his own. He is once again in diapers. He recieves all nourishment via tube feedings (though we are working incredibly hard at getting him to take even 2 ounces by bottle) After numerous tests and what felt like a lifetime of living on the Pediactrics unit they found that he suffers from a genetic heart condition called Hypertrophic Cardiomyopathy. Had they discovered this heart defect prior to his arrest and subsequent brain damage he would have qualified for a heart transplant. Since he now has severe brain damage he will never be on a transplant list due to "quality of life" issues. While our stories and situations are different I believe we share some similarities. It is very difficult to deal with a new diagnosis; let alone one that is so rare. Jeffrey is the only toddler diagnosed with this condition alive today (all others did not survive their cardiac arrests or were post-puberty aged) I understand how scarey it is not to know what the future holds for you and your family. In my situation though I have learned how incredibly important it is to live in the present. Time with our kids is as fragile as a butterfly's wings. It is both a delicate and beautiful thing. Cherish each moment you are blessed with. And find peace in knowing that you are never alone.

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