Two days before Thanksgiving November 2017, Baine contracted the stomach flu virus that was going around the community and at his home as well. Although Baine stopped vomiting in the early morning the day before Thanksgiving he did not recover back to his normal state of health. He became lethargic and unable to function normally. This progressed very quickly and soon Baine was unable to see, walk, or talk.
He was taken quickly to the emergency room in Logan. Many, many tests were done to try and diagnose this amazing little boy, but all came back normal. He was air lifted to Primary Children’s Hospital where an ammonia level was done, which showed extremely high levels. But this time the damage to his brain was too great and he never woke up again. He was on life support for 36 hours before he was declared clinically dead at which time he was able to donate his organs.
Since the diagnosis of OTC deficiency. was given, Baine’s parents and family have worked diligently to try and educate themselves and others about this devastating disorder. To try to prevent other families from experiencing this tragedy. Facebook and Instagram posts have been made to try and educate others, but mostly to try to connect with others who may be at risk for this deficiency.
A few months after Baine passed away, Baine’s family was notified by a family from St. George, Utah that had seen the posts on Facebook about OTC deficiency. They too had this rare gene deficiency, and had been battling to educate themselves and others. Through a lot of conversation and trading of information it was found that Baine and the boy in St. George shared the same rare mutation of the gene. Now was the time to do genealogy and trace this gene back as far as possible and notify ALL family members that could be carriers or have the disease. With both families working together from both ends of the state, the gene was traced back 7 generations to a common relative of both families. Testing is now being done on many family members that are at risk, with some coming up positive, which is scary to think that the devastating outcome of this could be death. But, now with the knowledge of knowing, and the treatment to control the disease, it is very possible to prevent this disease from taking other lives.
Baines family does not want Baine’s death to be in vain. It is very important to educate and bring awareness of this disease. Baine may not be here with us on earth anymore but #baineslegacy lives on to save lives! Visit https://www.baineslegacy.com
