07 Aug Gideon’s Story: Getting daily nutrients from donor milk
Gideon was born full term and passed his newborn screening with flying colors. At seven weeks, however, his family began to notice weakness in his body movements and functions. At one point, he turned blue in his car seat from not being able to hold his head up on his own. After what seemed like hundreds of tests, Gideon was diagnosed with a neuromuscular disease called Spinal Muscular Atrophy (SMA). Gideon has Type I, the most serious form.
SMA is similar to Lou Gehrig’s disease (ALS) in that motor functions are lost but intellect is never affected. Gideon was projected to have only seven more months to live.
He had many GI issues. Like some other children with SMA, Gideon had issues tolerating and absorbing fat. He was breastfed as a baby but eventually he lost his ability to swallow at five months old. Now, as part of his diet that that he receives through a G-tube, Gideon consumes 8 ounces of donor breast milk a day. Without donor milk, Gideon would not have enough fat in his diet; this means his nervous system, heart, and brain development would all begin to suffer.
Gideon is now three years old and thriving. Between having the support of a strong nationwide community of other SMA families and being part of a clinical trial, Gideon has not only reached the age of three, but he is slowly getting stronger. Gideon can now vocalize vowel sounds and single out his pointer finger to make choices. He’s making progress and donor milk is part of his journey.