“Through Liam, our family has learned how to come together in new ways and love even more than we thought we could. We have all had to learn how to live life with a special needs child and brother. What a gift and a blessing. We are thankful for Liam’s smile, laughter, and brilliance.”
A Message from Liam’s Family:
When Liam was about one, we noticed he wasn’t meeting the typical milestones our other children met by that age. We chalked it up to everyone being different and so we gave it time. Boy, were we wrong. At age 2.5, Liam saw a specialist in Kansas City. They were stumped with what Liam was dealing with and just recommended physical therapy. It helped maintain where Liam was but didn’t help “fix” anything. Fast forward to age 6. We were still as much in the dark about Liam as we were when he was 2. We finally made an appointment at Boston Children’s Hospital where they tested him for everything under the sun. When they came up empty handed, they sent us home with a “there’s nothing more they could do for us”. We had to keep fighting for our son. There had to be some answer somewhere.
We made an appointment with Shriners Hospital in Boston. They were a burn Hospital (not anything Liam needed), but they were connected to Mass. General. There we saw an Orthopedist who was just as confused as the other doctors we went to previously, but he was very motivated and excited to figure out the mystery behind our son. It was at that time Liam had acquired a team of 10 neurologists at Mass. General. They worked with Liam and with one another on their findings. Ultimately, they had no answer and could just treat symptoms as they presented themselves. Finally, it was time for a genetic test. We received the results of the genetic test two days before we moved away. There really was no explanation of what was discovered. We were still lost, but this time with a reason in hand. We moved to North Carolina and went to Duke on referral from our team of neurologists. Once again, the doctors didn’t know what they were dealing with, had never heard of it, and recommended we just keep doing what we were already doing. Talk about feeling like you’re on your own island.
After 5 years of Liam regressing, falling more and more, having what he refers to as “fuzzy brain,” and just not looking great, we called Shriners once again. January 4th, 2022, Liam underwent a major surgery. Technically it was 7 surgeries in one. They lengthened Liam’s hamstrings, transferred Liam’s abductors, worked on his groin, broke both femurs and tibias to put rods in them secured with screws, and then his left tibia was rotated and held in place with a metal plate and six screws. He has spent the last 4 months doing physical therapy and occupational therapy multiple times a day. I can honestly say through all the doubts, tears, fears, and questions…it was a HUGE success. Not only has Liam shined so bright through all of his adversity in life, but he’s also better than ever. From the kid that was 12 years old who was never able to dress himself because he couldn’t function properly from the waist down- he is now dressing himself, putting his shoes and socks on, and tying them all on his own. He is living more independently and working hard to walk on his own with balance. Liam no longer needs his walker, and he is excited to have the freedom the rest of his family does without the fears of falling every few feet.
Liam still struggles with comprehension, remembering things, and is still not at age level in school. Liam works very hard and is a happy pre-teen. Right now, Liam is getting ready for the Special Olympics and is ready to succeed just by trying.
Everyone always asks us what our goals are for Liam. I can never answer that question when it comes to him. Ask about any of our other 3 children, and we can answer. With Liam, we are happy to take it day by day, because as life with Liam has shown, every day is different and should be taken one day at a time. It’s important for us that they find a treatment or cure so that no other kid has to have this major surgery just to be able to achieve the basic functions of daily living.
It wasn’t until a few days ago (April 24,2022) that we found out there were more people like Liam. We were told when we were given our genetic results that Liam was the only one they knew of with this disease. It’s such a blessing to have a community that understands and knows. Our hopes are to have treatment for this disease and a cure. For now, we will remain feeling blessed to have Liam. Through Liam, our family has learned how to come together in new ways and love even more than we thought we could. We have all had to learn how to live life with a special needs child and brother. What a gift and a blessing. We are thankful for Liam’s smile, laughter, and brilliance.
