My name is Jennifer and I’m 33 years old. I have two wonderful boys ages 8 and 13 who suffer from this horrible disease. So far, we have experiences a lot of medical problems with their ears, hair, private areas and lack of weight gain, which has caused my oldest son to not enter puberty! We have had no trouble so far with their blood, but their nails, hair and skin are deeply affected. We are hoping this as the worst that it gets for them – I’m praying!!!!!!! If you wish to contact me, I would love to talk to get ideas of what other parents are doing to research this disease and what doctors they would recommend us going to see. Please keep in touch! Right now my boys are doing good – they just both had surgery, but it was minor and they are doing great!!
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