Painting by: Janet Harrold
It’s What He Wanted The Collin McDaniel Story By: Avis Coleman
There are no words to describe the terror in a parent’s heart when her perfectly healthy, perfectly developing child goes blind in just a few days. That’s what happened to five-year-old Collin McDaniel, from Hazelhurst, Georgia in 2007. His mother, Lisa, had no idea what to do. “We were scared,” said Lisa. “We weren’t sure what was going on. He had fallen off the bed a few days before. My first thought was he had injured himself more than we thought when he fell.” A trip to the eye doctors showed Collin’s optic nerves in both eyes were swollen. They rushed him to Savannah to see Pediatric Neurologist Terry Bunch. At first glance, Dr. Bunch couldn’t diagnose the cause of Collin’s condition but she knew it was serious. He went straight into ICU for tests and monitoring. Lisa thought her son had a brain tumor. His MRI the next day revealed lesions on his brain which did not resemble a brain tumor. It looked like Collin had Multiple Sclerosis. He began a regimen of IV steroids followed by oral steroids. He seemed to improve until three weeks later when new problems arose. Collin began losing his balance and falling. The 40 l Something Special
family was told to consider MS medications which are more risky and bring more severe side effects. Throughout all of this, Collin never complained. He never told his mother he couldn’t see and he never told her about the pain he was experiencing. Dr. Bunch and the family decided to get a second opinion and they looked for a specialist in this particular field. The closest they could find was the Center for Pediatric Onset Demyelinating Diseases run by Dr. Jayne Ness in Birmingham Alabama. The family traveled for more testing and blood work. After a few days, Dr. Ness told the nervous parents that Collin did not have MS. Lisa remembers thinking, “If it’s not MS, then it’s not good. She told us she thought our child had Neuromyelitis Optica. After she explained it, we knew it was bad.” This condition, known as NMO, is a very rare syndrome of the central nervous system that attacks the optic nerves and spinal cord. Its severity, the MRI findings, the lesions on the spinal cord and the other markers determine the diagnosis. Doctors treat it aggressively but the prognosis is dire. Dr. Ness began a regimen of plasmapheresis (blood filtering). Collin had gained 70 pounds from the all the steroids of the past six months. He was in a wheelchair. At the time of his diagnosis, doctors didn’t know much about this condition. He was given four to five years to live. Over half the patients were completely blind or paralyzed or both. Or they hadn’t survived. The McDaniels packed up their family and moved to Anniston (near Birmingham) to give Collin a fighting chance. And fight he did! Over the next few years, he developed more symptoms of increased flareups, which meant new steroid protocols, more
plasmapheresis. Sometimes he would improve for two to three weeks, but he would always start to decline again. Lisa knew she needed help with her child’s debilitating condition and she needed to know they weren’t alone. While researching the internet, she ran across a foundation called the Guthy-Jackson Charitable Foundation. It was started in Los Angeles by Victoria Jackson and Bill Guthy. Their daughter had been diagnosed with NMO. These owners of the ProActiv Skin Care Company discovered there was very little information on this syndrome and began to pour money into research and information sharing. The Foundation attracts doctors and families to their annual Patient Day in November. This event puts patients with caregivers and researchers to network, educate and (when necessary) console each other. Started in 2009, Lisa was there for its inaugural event and has marveled at the strides made in just the few short years since. “It’s a big deal when you or someone you love has an incredibly rare disease,” said Lisa. “ To have someone want to help you get where you need to be and to interact with other patients, it’s invaluable.” In spite of the advancements in this syndrome, Collin’s condition digressed drastically. Eventually he lost control of his bladder, couldn’t eat, couldn’t hydrate and all his little body’s systems began to
that first fall from his bed. “Collin knew before we did that he was dying,” recalls Lisa. “We couldn’t come to terms and face the death of our child. I think Collin held on so long because of us. He needed to know we were going to be ok.” One year later, Lisa has channeled Collin’s fighting spirit and is working for the organization that gave her such support and hope during his struggle. She is now the Consulting Advocate – a liaison between the families and the six pediatric centers across the nation that specialize in children with MS and NMO. The foundation is responsible for the creation of a camp for children with these disorders as well as fundraising, education and awareness. “Throughout Collins’ illness I knew there was something bigger,” said Lisa. “Don’t get me wrong, I would much rather have Collin here and taking care of him. But we have learned to look at the bigger picture and the people we can help. That’s what’s important now - helping these other people
and continuing what Collin showed us and what we learned from him.” Though he was the one suffering, Collin became the comforter. “He always wanted to know how you were doing. He was happy when people came to see him. He wanted to know where you were in your relationship with God,” said the proud Lisa. “Collin was a free-spirited, loving, compassionate child and he changed the world as we journalled his story through Caringbridge. We still hear from people how much he inspired them. The NMO community embraced him as their mascot. They said he inspired them to keep fighting.” Teamed up with Guthy-Jackson, Lisa has found a purpose and a mission, as Victoria Jackson promises, “We won’t give up until we find a way to stop this disease from devastating families’ lives like it has ours.” That’s what Collin wanted.
Collin’s parents started a foundation to help families who have children with NMO. It is called The Collin McDaniel Hope Foundation and helps financially with medicine, bills, travel to the doctors.
shut down. In 2011, Hospice came to their home to make him more comfortable. Collin passed away in 2012, four and a half years after
Right: Collin McDaniel
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