Jake was born with a congenital abnormality called Cortical Dysplasia. It basically means the neurons did not migrate properly in the brain during development. The area in Jake’s brain that was mostly affected by this is the motor section which has caused him to have right-sided weakness and no useful function of his right arm and hand. Due to the abnormality in his brain, he developed seizures right before his third birthday. He has experienced three different types of seizures with the main one being Myoclonic Astatic Epilepsy. He suffered through this for 24 hours 7 days a week while they were trying to regulate and find the right medicine. Unfortunately with the amount of seizure activity he experienced, he has suffered cognitively causing him to be mentally challenged.
Shriner’s Hospital of Chicago has been so caring and helpful to Jake by providing him with an orthotic for his shoe to prevent his ankle from caving in when he walks. Last year, the Shriner’s Hospitals (all 22) were conducting a study for children like Jake where just one arm is affected by some type of condition. They were trying to see what form of treatment was most effective. Jake fit the criteria and joined the study and was chosen to receive Botox injections into his arm/hand followed by a therapy program conducted at home. We definitely saw some improvement which was a good sign that surgery for tendon transfers would be beneficial for Jake. On 2/3/12, Dr. Bindra graciously performed the tendon transfers for Jake’s thumb, wrist and forearm in order for Jake to try to gain more function in those areas. While he is currently recovering from surgery, we are very anxious and excited to see what the outcomes will be for Jake. After the month long cast, he will move into a splint and start therapy to try to build movement and strength.
We are very thankful to Shriner’s Hospital of Chicago for all the love and care they have given to Jake. It is a wonderful place where everyone feels welcomed and accepted. It is amazing how they have a team of doctors, nurses, social workers, therapists, nutritionists, etc. that are always available and willing to help fulfill any needs you may have as well as the needs you didn’t even realize you had. They treat the whole child which is just as important as treating just the physical issue.