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International Organization of Glutaric Acidemia

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Carter Darren Sheldon PDF Print E-mail

Our son Carter Darren Sheldon was born a healthy baby boy on June 11, 2005. I had a great pregnancy and a normal labour, and he came out perfect! Our doctors only concern was his rapid head growth, his head circumference jumped from the 50th to 75th percentile in his first six weeks, and by the time he was 5months, it was off the charts. We were sent for an MRI, and were accused of child abuse when they found some bleeding in his brain. We were devastated, I am a stay at home mom, and have only left him in the care of close loved ones. I thought that someone had dropped him and were too afraid to tell me since I knew he wasn’t hurt with me. We carried on with our lives and he continued to grow and develop normally, meeting all of his milestones, but his head continued to grow. When he was 11 months old, he contracted a flu virus. He became so dehydrated from vomiting all day that we took him to emergency. He perked up right away from the IV fluids and another MRI was performed. They found more blood, but claimed it was from his veins stretching from the fluid on his brain and decided to operate to relieve the pressure that could have been causing him to vomit. We also discovered that he had two arachnoid cysts. We were in hospital for two weeks while three surgeries were performed. He recovered well and we were home in time for his first birthday party!! Unfortunately, he became sick with a fever and his incisions became so infected that we were back in the hospital on his birthday where they performed another surgery to clean out the infection. They decided to do another MRI to make sure the infection hadn’t gotten into his brain, but this time they noticed something different which lead them to test for GA1. We were finally diagnosed on July 7, 2006.

It was a huge adjustment at first, he went from a high protein diet consisting of meat and whole milk, to a glutarex, vegan diet. I weigh and calculate all of his lysine and calorie intake, and he takes riboflavin and carnatine supplements. He had a special helmet made for him to wear but it has been hard to convince him to wear it lately since he has discovered how to take it off! I feel so blessed to be a stay at home parent, because he does not need to be in child care we have been able to prevent him from contracting many illnesses and have avoided hospital stays. We stay pretty isolated in cold and flu season, and he has only been admitted four times in the past two years. Today he is a healthy and happy toddler! He did have a speech delay, but is now caught up and speaking 5-6 word sentences, loves to dance, and is just completely wild and crazy! We are so blessed that he is doing so well after going his first year without being diagnosed and thank God every day for our little miracle.

We would love to get in touch with other GA1 families. Please feel free to contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

 
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