How old were you when you had your stroke? Andrew was 5 when he had a major stroke that required brain surgery. He also had 4 smaller strokes (all occurring between July 2010 and July 2011).
- Date of your stroke? 11/26/2010
- What general area do you live in? Cedarburg, Wisconsin
- Type of Stroke? Right frontal hemorrhagic
- Any known reasons for your stroke? We traveled the country to many different doctors to find the cause of Andrew’s strokes. He had his genome sequenced twice. In, 2014, The National Institutes of Health (NIH), finally diagnosed him with a new, rare deficiency…DADA2. He’s lacking the ADA2 enzyme. When he was diagnosed 3 years ago, he was one of 5 patients in the U.S. Now, with more screening and knowledge of the disease, there are more than 80 patients in the world. NIH is working on a cure. As of now, to keep his inflammation down, he gets weekly shots of Enbrel.
- What were your symptoms? As a toddler, Andrew had many viruses and infections. After the MMR vaccination, he became more sickly. When he was 3, he had a high fever for 6 weeks. He was admitted, with no main cause, other than his body’s inflammation markers were extremely elevated. They put him on prednisone, but it only worked for a short time. His first stroke happened when we were walking down the hallway at the hospital, going to one of his appointments. He kept falling into me and told me he was seeing double. His second stroke, a few months later, was a screaming headache. His 3rd stroke (a week after the 2nd), he had a fever of 105. Because his strokes were both clots and bleeds, his doctors didn’t know what to do, so they put him on aspirin and plavix (2 blood thinners). Three days later, in November of 2010, he came in from outside screaming and he couldn’t walk. His whole left side was paralyzed. He had a massive stroke, caused by the 2 blood thinners. He was such a fighter and pulled through, a true miracle. He spent a month in the hospital and continues to do physical therapy. His 5th stroke, in July of 2011, he woke up and his eyes were looking in different directions.Andrew has the best sense of humor and loves life! He is in 5th grade and loves school, but struggles with most subjects. He walks with a limp and wears a brace on his left foot. He gets botox often, to keep the muscles loose in his leg and foot.
Because of the damage caused by the large stroke, Andrew has constant seizure activity. He’s had two epilepsy surgeries that didn’t work. We were told his next best option would be a hemispherectomy –where they disconnect the right half of his brain from the left. We are obviously scared to put him through another surgery, so we’re in the process of getting other opinions. We’ve tried most meds and medicinal marijuana, but he continues to have seizures.
- Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No
- Where did you go for inpatient rehab? Children’s Hospital of Wisconsin
- Where did you go for outpatient rehab? Ozaukee Therapy in Mequon, WI
- What are your biggest challenges/residual effects? Andrew has drop foot on the left side, so he wears a brace. Because of the weakness, his left leg is now about a half inch shorter than the right.