The Help Hailey Foundation was formed from a promise my husband and I made to our beautiful baby girl, Hailey Lynn.
Hailey Lynn was born full term and perfectly healthy. Shortly after bringing her home she began having feeding problems and not gaining weight, but this is not uncommon with new babies. It wasn’t until she developed RSV and was placed in the hospital that we learned it was much more than just a feeding issue. Unfortunately at only four weeks old we began our long difficult search for Hailey’s diagnosis.
After four long and stressful stays in the hospitals here in Oklahoma we made the decision to travel to one of the top ranked hospitals in the nation, Texas Children’s Hospital in Houston. She was evaluated and tested by many doctors in every specialty and after weeks in one of the largest, highly ranked hospitals, we were once again told that they did not have any answers and they also didn’t know of any more testing to find answers.
We were devastated, but we were not going to “wait and see” as one doctor had told us. We began researching all the top doctors and researchers in the country looking for someone who might be able to help us find insight into why our daughter was having feeding problems and developmental delays. We put together a packet with our daughter’s photo, a letter explaining her illness and our path in the fight for answers, as well as all of her medical information. The response was amazing with many doctors emailing, sending letters, and some doctors took the time to call me personally. We were so blessed with the response and the amount of doctors that not only gave us ideas and possible avenues to research, but also wanted to see Hailey in person.
We were excited to make the trip to Baltimore’s John’s Hopkins, a highly recommended hospital. However after being evaluated and tested by two specialist once again we left with no answers, but pending tests that would take four to six weeks. We had sent in so many tests and unfortunately we were used to this waiting period. There were so many times I prepared myself for the diagnosis they were testing for then relieved, yet frustrated, when the results returned normal. The doctors in Baltimore did not believe Hailey had a mitochondrial disorder, but they also admitted that they did not specialize in Mitochondrial disorders.
From all of the responses we had received the majority of the doctors believed we should get a second opinion on Hailey possibly having a Mitochondrial disorder and because the doctors in Baltimore were not Mitochondrial specialists we decided instead of heading to the next highly ranked doctor from yet another state that we should first visit a Mitochondrial specialist.
This brought us to the Cleveland Clinic and for the first time in our journey we found a doctor who believed he knew what was causing our child’s developmental problems. The first words out of his mouth were “So your child has Leigh’s disease.” This was amazing to finally have someone with answers, but the reality that our daughter had a terminal illness was devastating.
All of the Signs and Symptoms of Leigh’s disease matched our daughter perfectly and it is still hard to believe that it took almost an entire year and multiple specialists in many fields to finally find a possible diagnosis. It is still only a possible diagnosis because Hailey was never truly diagnosed. We continued testing Hailey until all possible tests had been made. Our doctor told us that until further research could be identified we could not know 100% what mutation caused Hailey’s illness.
Hailey Lynn passed away at the young age of two from probable Leigh’s Disease (a mitochondrial disorder) and it was then that we made our promise to never stop fighting for other children with childhood diseases, and we would continue to raise awareness and funding for Mitochondrial disease. It is our hope that we can help families through access to medical professionals, fundraising to offset the financial burden of treatment and care, provide education and awareness about Mitochondrial disease, promote research funding and connect families living through similar experiences.
