Our pediatrician referred us to Boston Children’s Hospital when Tyler was six years old and we learned he had Ataxia, a rare neuromuscular degenerative disease. Because of his rare disease no one really had any answers.
When Tyler was hospitalized at Boston Children’s we were really scared since his disease took such a quick progression. We live over three hours away and didn’t want to leave Tyler’s side. Tyler’s disease, over the years, had a huge financial impact on our family. Even as a middle class family with both parents working, the co-pays, genetic testing and medical bills each month it began to takes its toll. As his mom, I had to take a leave from work as well. We could not afford for me to stay in a hotel since Boston is so expensive. Tyler was our child though and we would travel to the ends of world to try and save his life.
When I got the call that I secured a spot at the Ronald McDonald House at Boston Harbor it was the best news we had received in years. The staff at RMH at Boston Harbor was amazing. They made sure we had everything we needed and it’s the most magical place. After spending the whole day with Tyler, I had a place to regroup, because having a child with a rare disease with no cure is unimaginable. We also needed to be strong for Tyler since he was so scared and didn’t know what was happening with his body. The apartment fit our whole family and allowed us to be together as a family whenever possible. We even spent Tyler’s last Christmas and New Year’s in Boston and had a place to make all his favorite foods to bring to the hospital.
At RMH Boston Harbor we could spend time in the common area with other families experiencing the same thing as us, or we could have our alone time in our apartment to regroup and cry as we processed the never ending bad news. We could walk to restaurants and it was so healing to walk around the Harbor and get fresh air. If we had any downtime that is what we did. RMH Boston Harbor is in the most beautiful and historic location.
We never expected Tyler’s disease to progress as quickly as it did and lose him at the age of 17. We loved him so much. The best recommendation I have for a Rare Disease Family, is to research all the wonderful organizations that are available to you like the Ronald McDonald House. It’s okay to ask for help and let this amazing organization take care of you. Also, we fought so hard to do everything possible to get the answers we wanted and to find a cure, sometimes this interfered with the time we actually had left with Tyler.
We loved everything about Ronald McDonald House. We will forever be grateful for everything you did for us. We loved all the organizations that came and fed us meals. When I think about one of the most healing places on our son’s journey, one of my first thoughts is always of the Ronald McDonald House at Boston Harbor.