Ryker's story is shared by his mom, Megan
Ryker is our sweet blonde haired, blue eyed, 3 year old boy. He’s so kind and caring. He is the older brother to Luke, by 4 minutes. Our first clue, looking back, was a decline on the growth chart in height around 6 months old. He had multiple ear infections his first 2 years of life. Then we started noticing some eye movement changes around a year, then again around 2.5 followed by vomitting almost daily in the morning. He also never perfected his balance. He otherwise met all milestones normally and is so smart!
He had been hospitalized twice by the time he was 3.5 for demylentation noted on MRI scans. We brought him in for the eye changes and vomitting both times. He was treated with high dose steroids but after the 2nd time they started digging deeper.
We went for a special MRI that indicated a metabolic related issue. This was followed by genetic testing, which revealed SURF1 Leigh syndrome. The day was absolutely gut wrenching. We had no idea we’d be leaving with such a terrible diagnosis for our child.
Currently, he is a pretty average almost 4-year-old. Other than eye alignment issues, balance, and easily fatigued. He enjoys being outside, riding his bike, and swimming. This is still very new to us. We have so much hope in gene therapy and pray for a miracle every day for all the kiddos suffering from this. ♡
