December Featured AxD Featured Angel
When Christopher was 5 months old, we realized that he wasn’t hitting the milestones that he should have been. He was such a calm baby, he hardly ever cried, but he wasn’t trying to sit up or wiggle much. The evening of May 27, 2005, we were working with him, propping him up against pillows to see if he could support himself. It was early, the very next morning, that he had his first seizure.
Christopher was transported via ambulance to Children’s Hospital of Austin. The seizure was finally stopped after two hours, and Christopher was admitted to the hospital for testing. Over the next couple of days, he endured many tests, blood work, CT scan and an MRI. We were told by the attending physician that there was something wrong with Christopher’s scans and that although he wasn’t certain of what Christopher had, he was going to be mentally retarded. I argued with him that he was wrong. I wouldn’t accept it. I’ll never forget the way he told me he could be but was sure he wasn’t. We met with Dr. Jeffrey Kane, an amazing and kind neurologist a few days later. He suspected that Christopher had Alexander’s Disease. Genetic testing confirmed the diagnosis on September 1, 2005. We were told Christopher would only live two years.
16 years ago, we didn’t have the opportunities as we have now. We found Hunter’s Hope and United Leukodystrophy Foundation online. We met families in chat rooms and eventually were able to attend the symposiums and medical conferences where we met some amazing doctors who gave us hope! At the Hunter’s Hope Symposium, we met Dr. Joanne Kurtzberg and learned about stem cell transplants. We prayed that this would be a cure. We traveled to Duke University, but sadly, Christopher was already symptomatic and did not qualify to participate. We were willing to try anything to save our son. We met Dr. Messing in 2008 at the first ULF Alexander’s Disease conference. It was there that we learned there was no treatment and that we would not see a treatment in our son’s lifetime. Our world was crushed.
We came back home determined to give Christopher the best quality of life possible. Although Christopher never learned to walk and lost the ability to stand and crawl at an early age, he was a traveler. He went to Disney World more times than most folks do in a lifetime. He traveled to the nation’s capital to visit nearly every museum and monument there and watch a Fourth of July fireworks show not far from the Washington Monument. Christopher visited Raleigh and Philadelphia in search of a cure for this terrible disease. He got to visit Niagara Falls while in Buffalo where he met Hall of Famer Jim Kelly and a bunch of other special kids and families at Hunter’s Hope. Christopher visited other states to spend time with family; his feet have touched the ocean in California, he experienced the deep woods of Minnesota lake cabin life that is so dear to his dad, climbed the hills in Tennessee and crossed the plains of Texas to El Paso. Christopher loved human interaction. He would light up whenever someone would come talk to him or engage him with reading. He loved the Harry Potter and Land of Stories series. He also loved participating in events at school. We are forever grateful to his music teacher for incorporating Christopher into her school programs where he had his first feature part as the director of Lights Camera Action in third grade and subsequent roles as a pirate and zombie in later years. Christopher loved the outdoors and went for long walks with mom and dad and his nurses. He enjoyed being out on the lake on the boat with the sun on his face and wind in his hair.
Christopher’s legacy will continue. We prayed for a miracle in his healing. We put our faith in God and had 14 beautiful years with our son. He brought people into our lives that we would have never met. He restored our faith in humanity. His spirit was big. It still is!!