Story by Amye Marquis
Riley is a true Miracle. Born 12 days early, with her twin brother, Carter, we thought our lives were perfect.
Then, at around 9 months, we noticed a change in Riley (Roo), She was losing weight, she was not crying, she was puking after every bottle, and she was clearly falling behind developmentally. Each doctor’s visit we got the same advice: “you should not compare them,” They’re twins, each kid develops differently.”
We eventually changed doctors, because as parent I knew something was not right. That’s when a proactive PCP, scheduled Roo’s MRI, and we were given the worst news a parent can get…your child is terminal, and she will die. She was diagnosed with Mitochondrial Disease – Leigh’s.
When Riley was 16 months old, she stopped breathing.
We called 911, got a breathing tube ( the first of many in the coming months) and ICU doctors would just write her off, saying due to her terminal illness, there was nothing they could do and that wee had to deal with it. In July, after the oxygen mask to keep her stats up was failing her, I had to make a choice to say goodbye to my 16 month old daughter or keep fighting even when I was told her quality of life was bleak, and I was being selfish for even thinking of putting a tracheotomy in her. I was told countless times to let her go, as a mother I was not ready to give up on her when others had. I was okay with having her on a vent 24 hours a day, I was fine, knowing she would never walk or talk, I was fine knowing that even with all of that I would have her with me. And part of me was selfish
On July 14th Riley got her trach, she came home Aug 7th, and against the odds of the doctors, she is off her Ventilator 90% of the day, she crawls, stands, walks while holding things, and talks. The tracheotomy was the best thing for her, and it gave my daughter back to me. She has gained weight, Riley just celebrated her second birthday. She is a true fighter, in all the darkest hour she will always be smiling, her trach, gives me the option to talk about her illness, to spread awareness. Riley is showing people that even if people give up on you, keep fighting to prove them wrong. And she will keep fighting, right alongside her parents, until we find a cure.