Carter and Harper, Age 10 and 3
Glutaric Acidemia, Type 1
Hi there, my name is Amber, and I am the proud mom of three beautiful children, Carter, 10 (GA1), Callum, 6 (unaffected) and Harper is 3 (GA1). The last time I wrote for OAA, Carter was 2 and we had been through the ringer with his health issues. After a child abuse accusation and 3 surgeries to remove fluid and blood around his brain, he was finally diagnosed with GA1 at 13 months old. He is now 10 and doing extremely well! He excels at school, plays hockey, baseball and guitar, and has a great personality! He is on carnitine, and although we do not closely monitor his diet, he knows that he can onlyhave a limited amount of protein and does great on managing it himself! The last time he was hospitalized he was five years old, and thankfully he has no memories of all of the needles and IV trauma. I think all of the hospital stays were harder on me than him!
We were so happy to welcome our second son in 2009, and to find out he was unaffected by GA1 was a huge relief! When Harper came in 2012, we were super excited to have a daughter, but I have to admit that we were devastated to discover her diagnoses. I thought about all of the hospital stays and needle pokes with Carter, and I was sad that she would have to go through all of that. I was also worried about how I was going to protect her from getting sick with two older brothers bringing home germs from school? I was terrified, but thanks to the grace of God, she has only been hospitalized one during a stomach flu when she was 2 ½. She has somehow managed stay extremely healthy, or we have been able to keep her hydrated at home through illnesses. She is now on a similar care plan as Carter, but she does drink her Glutarade essential every day. She is very smart and is doing great developmentally, and she enjoys her ballet and swimming classes. I plan on enrolling her in preschool in the fall as well.
Raising children with GA1 has at times been extremely challenging, but we try not to make too big of a deal of it so that Carter and Harper don’t feel that they are different from others. At times Carter will comment that he wishes he didn’t have GA1 so he can eat lots of protein, but we just remind him that there are lots of people out there with health issues, and that he really is extremely blessed to be so healthy. It is nice for us to be out of the danger zone, now that our kids are older and passed the stage of being vulnerable to injury, but I remember how scary it is to have an infant with GA1, and I want to send my love and encouragement to all of the parents out there who are living through those stressful times. I had no one to talk to when I was there, and would be happy to be there for anyone who needs it. Please do not hesitate to contact me with any questions, or even if you just want support or prayers from someone who has been there.
Thanks for reading!!
Amber & Keith
Carter's article in the 2008 OAA newsletter can be found here!
From the Winter 2015 OAA Newsletter