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Trevor’s Miles

“His fight inspires me daily. He is my hero. He struggles with weak bones and kidney complications. He is allergic to many foods. He overcomes everything with such zest for life and positively, he truly smirks through the pain. He can not be kept down, literally he climbs everything. He loves his sister and his dogs. He goes to school and rides horses. He lives and has a personality, while right about the count of chromosomes they were wrong about his quality of life.” – Trevor’s mom Kona

Trevor Miles came into this world weighing in at 3lbs 10 oz. His journey started small but the fight he had grew bigger than I ever imagined.

He was born a month early because he was growing so slowly, the doctors feared there was a problem. Doctors at Dartmouth induced me and after two days of laboring Trevor’s heart rate plummeted and he was born via emergency c section.

I saw his beautiful face only briefly before they rushed him to the NICU.
He could breathe room air but couldn’t swallow well. He found breathing and swallowing a dance he couldn’t get the rhythm of.

We transferred to a local hospital who eventually discharged us. We just thought he had an early entrance and had a feeding disorder. We couldn’t get a pound on him. I considered an ounce every two hours a victory. A cleft palate was found. Then hearing loss. Both addressed uneventfully.

It took 3 months or longer to get Trevor’s genetic results. Brett and I wanted to know what we were dealing with and not wanting to believe anything genetically could be looming over our heads.

Wolf-Hirschhorn syndrome, a deletion of the genetic material on the 4th chromosome.
My child was suddenly rare. Trevor was now “likely to not survive past age two and be devoid of personality”

We now had our label but it didn’t change his personality. Trevor was a joy to be around, he would light up a room with his laugh. Brett and I decided they had to be wrong.

We eventually had to put a g-tube placed because he never could find a rhythm to eat orally. He sat up, he was a chipper child. Sure he developed slower but he did develop.

He turned one and the seizures started. He wouldn’t stop seizing, hours would go by. ERs would helicopter him up to Dartmouth or if it was raining we would be sent to Mass General. Each time a medical coma would be induced until he stopped seizing. He would be “under” so long he would lose all muscle tone and become physically dependent on the drugs used to sedate him.

Trevor would struggle to be extubated then withdraw. He would be home for one to two weeks and seize again. We feared he was dying. He needed blood transfusions to keep his platelets up. His kidneys had a hard time keeping sodium in his body. He lost all oral skills he had. He lost the ability to sit, even hold his head. We found a combination of anticonvulsant medications that worked. After a year and a half, Trevor struggled to regain every lost skill. Except for oral eating he did! Trevor thrives!

Please help us walk this road. Trevor’s Miles are long and hard but he has never quit and we will never quit on him. Please contribute today!