Grant’s Story (Born on:01-26-2007)
We never heard of galactosemia until late Jan. 2007. Our second son, Grant, was born without complications. He was 3# smaller then our first baby and slept CONSTANTLY. At first, we thought this was a blessing..a SLEEPING baby is something we never experienced before. However, coupled with the fact Grant refused to eat, we became concerned. Was this a nursing problem or something more? The first 72 hours the baby consumed literally NOTHING, but was sent home from the hospital anyway. By the time we brought him home he lost considerable weight. At 5 days old we received a call stating Grant’s newborn screening came back positive for Galactosemia and to stop nursing him immediately. We asked several questions and got no answers. After a minor breakdown we called our pediatrician at home to ask what Galactosemia was and what we should expect. This was our answer, “he will likely go blind— he will have big problems learning and a ton of other issues—go in your bathroom—scream and swear and then come out and take care of your baby—it’s all you can do.” We found a geneticist and were told he probably didn’t have galactosemia because he did not have an enlarged liver and he wasn’t jaundice enough. We did the blood test, waited over 2 weeks for the results, were told there was a problem with the test, retested and after almost 1 month we received a positive diagnosis.
Grant was put on a safe formula (Similac- Powdered Soy) and has developed perfectly normal ever since. He did not “go blind,” or have big learning or other issues.” Grant follows a galactosemic diet…which seems to be ever changing, but we try to stay educated and make good decisions for Grant based on the information we have. Grant sees a genetist regularly and remains a happy kid who is developing on track! Praise God for all his blessings!
Grant’s family is passionate about education, support and research for Galactosemia. His mom started GAMA in 2007 to connect with other families affected by galactosemia and to make a difference. Since then GAMA has grown to include 20+ families in the midwest and has organized several fundraisers to support education and research. If you have questions or concerns please e-mail us at firstname.lastname@example.org.