A message from Ethan's mommy and daddy . . .
Ethan was born less than 3 weeks after our older son's 1st birthday. He was a little guy with a beautiful face. He had full head of hair and a birthmark on his forehead. Most doctors we polled said it was likely a stork bite and would fade over time. Being a little concerned, at 4 mos we took Ethan to see a dermatologist at NYU. He was the first to confirm that Ethan had a port wine stain. He told us laser treatments would help the mark fade and not to worry about anything like Sturge Weber because this was a small mark. We grew worried that this mark might be a part of a bigger problem so we took him for an eye exam. He got a clean bill of health. At 6 months old, he was smiling, babbling and had started to sit on his own.
On April 6, 2008 Ethan had a day no child should have to go through. That afternoon, we sat Ethan down and he just slumped over. We rushed him to the ER thinking he had bumped his head. In the ER he was crying and was not moving his left side. Then we saw it - a slight twitching of his arm and foot. It was a seizure. An MRI the next day confirmed our worst fears, he had Sturge Weber Syndrome. Our world, his world and our family's world had changed. We became part of a very small club of parents with a child affected with SWS. For the next 9 days he had dozens of seizures as they tried to get him on meds that would keep them controlled. Each seizure brought stroke like symptoms ... for Ethan, paralysis of his left side from his neck down. There we were frightened out of our minds and not knowing how much, if any, function Ethan would regain. I think it was on day 3 that we got in touch with Dr Comi, the Director of the Hunter Nelson Sturge Weber Clinic at Johns Hopkins. Without knowing us or meeting us, she instantly became an integral part of Ethan's care team. We have since been down to see her 4 times. Each time she gives us a glimpse into the work that is being done to uncover the mysteries of SWS.
It has been almost 2 years, two more hospitalizations and multiple seizures since Ethan's diagnosis. Ethan is the strongest and most resilient of boys. He loves to laugh and play with his big brother. Ethan has the most beautiful blue eyes and the best head of curly golden locks. Meeting him you would never know what he has and what he has gone through.
But there is one problem. Ethan cannot be cured of his epilepsy and Sturge Weber Syndrome. His dermatologist is doing an excellent job with lasering his birthmark, his eye doctor is making sure he is not developing glaucoma, his physical and occupational therapists are helping to minimize his left sided deficits from the stroke like aspect of his seizures, his neurologists are working to find the correct combination of medicines that will keep his seizures at a minimum and his pediatrician is making sure Ethan is growing strong. We are trying to provide him with the best care possible, and yet we cannot guarantee a good outcome.
We know this: Ethan has 2 loving parents, the best big brother, 4 devoted grandparents, 4 supportive aunts and uncles, a 1st cousin, great aunts and uncles and more cousins and friends who will go to the ends of the earth for him. We don't know much about his prognosis, but we do know that there is a link between prognosis and seizure control. While we do our best to manage his seizures and minimize his hospitalizations, our ultimate hope and dream is that a cure or treatment is found for the underlying disease process of the Syndrome. Every time we go to Hopkins we hope that Dr. Comi is going to share a major breakthrough with us. By supporting this golf event, you are helping us to keep this dream alive.
On April 6, 2008 Ethan had a day no child should have to go through. That afternoon, we sat Ethan down and he just slumped over. We rushed him to the ER thinking he had bumped his head. In the ER he was crying and was not moving his left side. Then we saw it - a slight twitching of his arm and foot. It was a seizure. An MRI the next day confirmed our worst fears, he had Sturge Weber Syndrome. Our world, his world and our family's world had changed. We became part of a very small club of parents with a child affected with SWS. For the next 9 days he had dozens of seizures as they tried to get him on meds that would keep them controlled. Each seizure brought stroke like symptoms ... for Ethan, paralysis of his left side from his neck down. There we were frightened out of our minds and not knowing how much, if any, function Ethan would regain. I think it was on day 3 that we got in touch with Dr Comi, the Director of the Hunter Nelson Sturge Weber Clinic at Johns Hopkins. Without knowing us or meeting us, she instantly became an integral part of Ethan's care team. We have since been down to see her 4 times. Each time she gives us a glimpse into the work that is being done to uncover the mysteries of SWS.
It has been almost 2 years, two more hospitalizations and multiple seizures since Ethan's diagnosis. Ethan is the strongest and most resilient of boys. He loves to laugh and play with his big brother. Ethan has the most beautiful blue eyes and the best head of curly golden locks. Meeting him you would never know what he has and what he has gone through.
But there is one problem. Ethan cannot be cured of his epilepsy and Sturge Weber Syndrome. His dermatologist is doing an excellent job with lasering his birthmark, his eye doctor is making sure he is not developing glaucoma, his physical and occupational therapists are helping to minimize his left sided deficits from the stroke like aspect of his seizures, his neurologists are working to find the correct combination of medicines that will keep his seizures at a minimum and his pediatrician is making sure Ethan is growing strong. We are trying to provide him with the best care possible, and yet we cannot guarantee a good outcome.
We know this: Ethan has 2 loving parents, the best big brother, 4 devoted grandparents, 4 supportive aunts and uncles, a 1st cousin, great aunts and uncles and more cousins and friends who will go to the ends of the earth for him. We don't know much about his prognosis, but we do know that there is a link between prognosis and seizure control. While we do our best to manage his seizures and minimize his hospitalizations, our ultimate hope and dream is that a cure or treatment is found for the underlying disease process of the Syndrome. Every time we go to Hopkins we hope that Dr. Comi is going to share a major breakthrough with us. By supporting this golf event, you are helping us to keep this dream alive.