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Our Kids

​Stephanie and Jack

Our Kids  / ​Stephanie & Jack D2HGA I’ve been meaning to write Stephanie’s story (and now Jack’s story) for a long time.  It just seemed like such a monumental task. The recent death of a very special baby boy with

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Our Kids

Sherry

Our Kids  / Sherry D2HGA My daughter Sherry was born with D2HGA. It was still a very novel disease at that time. I think there may be about 60 D2HGA’s globally?   At birth, she was tiny. Even at 36, I was

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Our Kids

Grant and Sebastian

Our Kids  / Grant & Sebastian Propionic Acidemia Our story with PA started out the same as many of yours.  Our sons were born looking perfectly healthy, besides being born six weeks early and being twins.  Everyone that saw them

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Our Kids

Sam

Our Kids  / Sam Isovaleric Acidemia My pregnancy and delivery with Sam were normal. After he was born in 1993, he started to vomit, and it became progressively more over his first few weeks and was projectile. He had some

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Our Kids

​Kumiko

Our Kids  / Kumiko MMA, Cbl C Kumiko was born September 12, 2001. I was 41 years old so we had an amniocentesis done. Without any history to indicate a MMA they didn’t think to look for such a rare

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Our Kids

​Kristie Lee and Johnny

Our Kids  / Kristie Lee & Johnny (3-MCC) 3-Methylcrotonyl-CoA Carboxylase Deficiency This is an update on my children Kristie-Lee who is now 13 and Johnny who is now 8. Johnny was born September 20, 2000. He seemed to be a

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Our Kids

Kate

Our Kids  / Kate Propionic Acidemia – Newborn Screened! Our family and friends were quite surprised when we told them over the Christmas Holiday 2006 that we were having a baby. We had been married 13 years and we were

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Our Kids

Josh

Our Kids  / Josh Glutaric Acidemia, Type 1 Hi.   My name is Josh, I am 23 and I have GA1 also known as Glutaric Acidemia Type 1. I have had this from age 2 it is cause from to much

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Our Kids

Johnny

Our Kids  / Johnny MMA, Mut 0 – Our Trip to the NIH Our NIH Visit, by John and Lourdes (Johnny, 6 Yrs. Old, MMA mut0) This is an account of the week we spent at NIH, participating in the clinical

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