Hi, my name is Maureen and my son Kole (22 months) just received a diagnosis of 4H Leukodystrophy last month after over a year of trying to figure ot what was causing all his issues. We started noticing delays at three months. We live in California and have amazing specialists following him, however none of them are very familiar with his genetic disease. Most cases that I have read, the childrwn affected with 4H did not show symptoms until later in life. Koles onset was very early. I will be attending the Hunters Hope Symposium in July, unfortunately Kole is not healthy enough to go with me. :( I am reaching out to see if there are other families with a child affected with 4H that can help me with resources for information. I have found it difficult to find information on this specfic Leukodystrophy. Any information would be greatly appreciated. We are trying to learn as much as possible about this disease so we can ensure our little Kole-Bear has the best quality of life possible.
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I am so glad you have a great medical team in CAlifornia, that's very important. Have you been able to apply for Medicaid since getting supplementary health insurance is really crucial for helping you get the care you need. So glad you are attending Hunter's Hope. I would be happy to get a care package out to you and your family. What size t-shirts do you wear? I also think you can go to our Facebook page for the Leukodystrophy Family Forum and you should be able to find other 4H families who might be a resource for networking. You can reach me at maria@thecalliopejoyfoundation.org