On the morning of April 8, 2013, Casey and Renae Bryans received their license to be foster parents. That same day, they received a call about a three-week old baby in the Neonatal Intensive Care Unit (NICU) who was ready to be released and in need of a home.
“Saying yes to that baby in the NICU was our family’s best ‘yes’ ever,” said Renae. “Jack joined our family of five that day and has been with us ever since. We had the privilege to adopt Jack when he was 16-months-old.”
Jack had been in the NICU for failure to thrive. While the Bryans knew he would have developmental delays, over time the delays became more concerning. At the age of one, Jack had surgery for esotropia in both eyes and he still wasn’t able to sit up independently. He started weekly physical therapy and his pediatrician began running various tests, including a MRI that revealed symmetrical lesions and elevated lactate peaks indicating a metabolic disorder. The Bryans took Jack to various specialists for more testing and ultimately ended up at the UTHealth Mitochondrial Center of Excellence where Jack was diagnosed with Leigh syndrome.
In the more than three years since his diagnosis, Jack and his family have been waiting for a drug clinical trial to open.
“In this difficult season of waiting, we will never give up hope and will follow Jack’s example of living every day to the fullest,” said Casey.
Jack continues with weekly physical, occupational, and speech therapy. He has had many hard days, including multiple hospitalizations. However, even on his weakest days, his parents say he still has a big smile on his face and has the most amazing belly laugh.
“We have watched Leigh syndrome take away so much from our sweet son, but it will not take Jack’s joy,” added Renae. “Jack is not defined by any diagnosis, but by the love and joy he brings to everyone he meets.”