Meet Samantha, the latest HCU Hero on the Miami Half Marathon team!
Samantha's Mom, Amber, shares their family's HCU journey:
Samantha Gibson was born June 2, 2015. Her newborn screen found her elevated homocysteine and was diagnosed with Homocystinuria around September 2015. Her first year was great and her levels were where they should be. Then the stomach flu hit her and her older brother.
After that Samantha refused her necessary formula. We tried everything- smoothies, mixing with baby cereal, flavorings, etc. As a few months went by she started to show signs of protein malnutrition. With the guidance of her metabolic doctor, we chose to try an NG tube. We did this for a few months, hoping it would trigger Samantha to drink her formula. Unfortunately it did not work, and we had to go the g-tube route.
So now not only do we have to monitor her daily protein intake, we have to give her formula through the tube three times a day. It is very stressful and time consuming through our day and her levels remain high, but she is doing great. Samantha is very happy, sassy, silly little girl.
We are thankful to God everyday for her and this condition. I have been able to exercise what I learned in culinary school to create new foods and recipes that work well for the HCU community and the allied disorders community. I love doing this to help everyone and I love that my daughter has shown me how.
If you'd like to make a donation to HCU Network America in honor of Samantha or another HCU Hero, please visit my fundraising page for the Miami Half Marathon:
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