Grant’s Story
Grant was admitted to Children’s Hospital in Washington, DC and another MRI among other tests were conducted. Grant was diagnosed with Epilepsy, but also something else I have never heard of – something called Polymicrogyria (meaning many small gyri on the brain). I was so distraught that I wanted to run down the halls of the hospital and yell. The Neurologist told us to take Grant home and treat him just like any normal 8 week old baby and love him. I asked her what did all this mean for his future, and she was unable to tell us what the future holds.
Grant was sent home with anti-seizure meds to keep his seizures under control. The medicines did not completely keep his seizures under control, and it made him extremely sleepy and lethargic all of the time.
When Grant turned 1, he had a prolonged seizure that lasted 5 minutes. I then called 911 and the ambulance came and transported him to the nearest ER. Grant had gotten pneumonia, and was intubated where the ER team collapsed one of his lungs. He was then flown by helicopter to Children’s Hospital in Washington, DC where he was treated. I rode with him in the helicopter to Children’s Hospital, and was barely able to stand up once we landed. I was sure he was not going to make it through this one. We started seeing a different Neurologist at Children’s where new anti-seizure medication was prescribed. Grant was discharged a week later to go home with new meds.
Grant continued to grow and eat well, but did not do the things that other 1 year olds do. He did not sit up, crawl, or grab at things. I was very concerned. Birthday after birthday I kept thinking this was the year he would start to crawl or grab things and act like a normal toddler does, and year after year I did not see any signs of the “normal” toddler behavior. Even though a diagnosis of Polymicrogyria was given at 8 weeks, we still did not know the cause. Year after year, we continued to search for a concrete diagnosis. Tests after tests were done to find out exactly what my little boy had. We took him to Kennedy Krieger in Baltimore, MD, and continued to do blood tests at Children’s Hospital in Washington, DC.
Finally, at age 3, Grant was diagnosed with a rare Chromosome Deletion 1p36 (Monosomy), and Grant’s was on the severe side. This was heart breaking news to us, but we were relieved to know exactly what we were dealing with. Once we had all of the information about this deletion, we were able to ask certain questions. We found out all the problems that come with this specific deletion. Grant continues to have seizures, and is still non-ambulatory and is non-verbal at this time. He also suffered from Reflux, and a mild Dilated Aorta. At this point he has six specialists that he sees on a regular basis.
