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Rare PA Twins

A wonderful experience in the air Traveling with our PA twins has really not been much of an option for us unless it’s a 3-4 hour drive at most. They are easily car sick and long road trips just don’t

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Our Kids

Matthew – ​MMA Cbl A

Our Kids  / Matthew MMA Cbl A Hi! My name is Matthew, I was born in Tucson, Arizona on February 3, 1971. My development was fairly normal. According to my Mom, I met developmental milestones on time, talked early at

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Our Kids

Elaina Rose

Our Kids  / Elaina Rose MMA Elaina Rose was born April 23rd, 2017 weighing 6lbs 12oz and had a head full of beautiful brown hair and she was absolutely perfect. Everything was going great; we got discharged to go home

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Our Kids

Avery

Our Kids  / Avery Malonic Acidemia About two weeks after we brought our new daughter Avery home from the hospital we received a call from our pediatrician’s office telling us that the state department of health had contacted them and

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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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