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We are the parents of a CESD patient. Our oldest daughter, Maureen, was diagnosed with CESD when she was 5 years old. She is now 14 and we are glad to hear about information being shared on this website. We knew about the disease and it's complications from our daughters specialist at Childrens Hospital in Philadelphia but now can share with others in a similar situation. We also have 3 other daughters that are unaffected by the disease (they don't have it nor do they have the mutated recessive gene that both my wife and I share that passed this on to our daughter.

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  • Wow, GREAT to hear she is doing so well! Look forward to seeing your family picture! It was very evident that something was very wrong with Gage...however it took us 3 months for a diagnosis as well. Hopefully with awareness that diagnosis time will shrink so these patients can get the treatment much sooner. Mary
  • Thank you for your response. I'm very sorry to read that your son had passed from Wolman's Disease. We learned a lot after Maureen was diagnosed. It was by chance that our family pediatrician suspected something was wrong with Maureen. We just thought she was ran down with a virus after returning from Disney for 8 days. She had an ultra sound and labs done and it actually took about 3 months for her to be diagnosed. Presently, she is very active playing soccer, swimming, running distance in track just to mention a few. I'm glad that I came across this support group. I will add a picture of our family, with Maureen included, in the near future. Take care.
  • Welcome! And thank you so much for sharing your story. My son Gage passed away from Wolman's Disease in 2009. Between the lack of good information and the lack of a support group, we felt so alone. Our hope is that this community can raise awareness to doctors and other families affected by the disease. Please feel free to share more of your story or ask any questions.
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