Jackson was born on June 4, 2014 with a port wine stain on the left side of his face. Only 1 in 5 thousand babies are born with the stain on their face and 1 in 30 thousand have the full syndrome. The full syndrome (Sturge-Weber) causes seizures, neurological damage and glaucoma. When Jackson was 2 months old he had a trabeculotomy surgery to try and release the pressure in his left eye. The surgery worked for 3 months before they had to go back in to place a Ahmed Shunt in his left eye due to his glaucoma and pressure increasing. Jackson is now wearing glasses and his eye seems to be doing much better. Jackson is also having laser treatments to lighten the port wine stain. At 3 months of age Jackson had an EEG and MRI and everything came back fine. Recently, we visited a neurologist in Baltimore at the Kennedy Krieger Institute who ordered Jackson's 2nd EEG. The EEG showed low brain activity on the left side which makes Jackson a candidate for seizures. The neurologist prescribed medication for Jackson if he were to have a seizure longer than 3 minutes. Jackson's next scan is an MRI, MRV and MRA to determine how much of the brain that has been affected and exactly what part.
Due to Jackson's medical condition and the many doctor visits in and out of town, I had to quit work to stay home with him. With me being at home with Jackson everyday it is easy during the day for me to detect a seizure. The problem comes during the night when we have no way to know if he is having a seizure or not. The neurologist recommended an EMFIT monitor, but insurance did not cover it. Jackson's doctor and nurses in Baltimore suggested we contact JoshProvides to see if they could provide us with a monitor. After contacting Mr. Chapnick, within 2 weeks we had an approval for the monitor. The monitor was shipped out and we received it within 2 days. Mr. Chapnick and his team have been a wonderful group of people to work with. They have provided us with a great piece of mind in monitoring Jackson's sleeping at night. Thank you so much for everything you have done for our family to make our situation easier to deal with.
Ashley, Jason and Jackson