Liam is an outstanding little boy who happens to have Limb Girdle Muscular Dystrophy.
Liam came thundering into the world in the middle of a crisp autumn night. He was a big baby, both solid and strong. We watched in amazement as this little person rocked our world. He showed his sweet dimples and winning smile. He demonstrated his deep commitment to the night time hours and all the fun they could provide.
Like most new babies he hated “tummy time” and had real trouble lifting his head. No red flags, this is normal. He rolled over on time, sat up on time, made eye contact and smiled on time. He never really crawled, but he did more of a scoot to get around, again, this was not a big red flag. Liam started walking, at 13 months, with the promise of a delicious Sarah Philip brownie.
We spent the next year noticing moments of hardship or fatigue. I wondered why he couldn’t keep up during walks with friends? I wondered why his walk was more of a swagger or strut? During Liam’s well child check up at age three I was truly concerned. Liam’s wonderful general practicioner respected my intuition as a mother and she refered us to Cincinnati Children’s Medical Center. Now we’ve hit the big time.
Our first visit in November of 2011, with a very newborn Lydia in tow we headed into the first of many visits to this massive hospital system. The doctors knew immediately that something wasn’t right and told us “this is going to be a long road”. I will always remember the look of fear on the young Doctor’s face as she delivered the vague news of where to go next.
December 1st, 2011, the worst day of my life.
The week prior Liam had a blood draw to find out his CK level. This would give his doctor an idea if Liam’s muscles were breaking down and at what rate. We entered our appointment with a very kind and incredibly smart Neurologist and already knew what he had to say was not good news. I remember holding Lydia in my arms and I rocked and comforted her. Liam played happily with a few plastic dinosuars and a juice box. My supportive strong mother and quiet concerned husband at my side. Dr. C performed what are now very routine exercises on Liam. I watched Dr. C’s face for any sign or hint of good news. It was a dry, grey, winter day and I started to sweat.
Dr. C looked me in the eyes and told me that he believed Liam had Muscular Dystrophy. In this day of WebMd and Google, I already had an idea of what this meant for Liam. As he continued to explain what he was seeing in Liam’s tiny body and what he knew to be true about this horrible spectrum of diseases I was lost in a cloud. I was so grateful to Lydia at that moment because holding her tight kept me from falling to the floor. My world just stopped. I still have no idea what else our doctor said in that meeting, I am forever grateful that my mother was there, and strong enough to remain intact and ask a few questions. What is next?
Liam had a blood test to see if he had Duchenne Muscular Dystrophy. It would take 6 weeks of waiting in agony before receiving word back of the results. In this time I blocked all internet access, so I wouldn’t torture myself with the information about what this could do to Liam, but I already knew, it was bad. That 6 weeks came and went and I spoke multiple times a day with the nurse as to any updates on the results. Finally hearing the news that Liam did not have Duchenne were the sweetest words I never expected to hear. I expected the worst. We were given a gift that he might live past 25 and may be able to walk pass the age of 12. A true gift that Liam’s MD friends have not been given, and it’s crushing.
What’s next? Liam was to be put under and a sliver of his leg muscle and skin taken out of his thigh. He was an absolute trooper and didn’t complain about the boredom of the hospital, the irritant of being asked questions, the nausea of the anesthetics or the fact that he was downright starving all day. He was amazing. The grown ups in the picture, not so amazing.
Biopsy, test, biopsy, exam,heart monitors, physical therapy appointments, pulmonary tests, and still no diagnosis. The action plan? “Treat him like any other little boy”. That was not going to cut it. I wanted a plan, a purpose, a focus. Give me HOPE of improvement!
Every few months Liam’s doctor would explain a form that he suspected Liam might have. We would test, and then we wait again for the results. Each time, investigating what this disease might mean for our boy, only to be heartbroken and confused when the results came back negative. After years had passed of no diagnosis, the disease had started to progress further in Liam’s arms and our Doctor thought to test for Limb Girdle MD. We finally received a diagnosis of Limb Girdle Muscular Dystrophy, Subtype LAMIN A/C. A diagnosis gives us a little control as we have an idea of where this disease will lead, but the bad news that now we need to very closely monitor his heart and lungs, along with his muscles.
Liam has seen half a dozen physical therapists as we find a nice balance of travel, cost, time and convenience. Liam has gone through just as many sets of orthotics or as he calls them “cast boots” that are intended to reduce the chance that he will drag his toes and trip. He also needs to wear “cast boots” at night time to keep his ankles from dropping, in hopes of keeping him walking longer. Nightly stretches are his reality now. I find my heart is heavy and my own arms are tired during this daily routine.
Before starting Kindergarten he was set up with a shiny, green wheelchair. He can walk, run and play and we intend on keeping his energy saved up to do those things. Stairs and long distances only drain him of his precious energy, so his wheelchair gives him that break he needs. Seeing your very young child in a wheelchair takes a very special kind of courage. I kept my chin high and showed Liam what a gift this new tool would be. A tool to help him live his life. I have the fortunate chance to shadow Liam and watch how people treat a child who can walk, compared to a child in a wheelchair, but that is an entire story in itself. It has now been suggested that we get Liam his own power wheelchair as his arm strength has decreased and he will not be able to be as independent in his manual wheelchair. Liam is really excited about getting a power chair, he sees how fast those chairs can go!
Our journey with Muscular Dystrophy is not just medical. It clearly is emotional. The financial burden is staggering. The damage this disease does to him is not just physical. The responsibility of those of us who are lucky enough to be in his life is to keep his spirit light and happy. My worst fear is to watch his passion and love for living fade away. I want him to stay the same joyful, beautiful boy that he is now. A mothers wish.