Colson's Medical and Education Fund

All most parents ever want is to have healthy, happy children. What happens when that unexpectedly changes?

Our beloved 3 1/2 year-old-son, Colson (aka "Coco"), suffers from a rare, x-linked, genetic mutation called IQSEC2. Some of the symptoms of the disorder include severe epilepsy, hypotonia, global developmental delay, self-injurious behavior, and autism. The disease is quite rare: the gene was just discovered in 2010, and so far, only about 100 people worldwide have been diagnosed with the mutation. As a result of his condition, Colson averages close to 30 seizures per day, and requires a g-tube for some feedings and medication. He is currently non-verbal and non-ambulatory, but we are hoping that with his weekly therapies, that will change one day.

Despite being on several anti-epileptic drugs and a special ketogenic diet, his excessive seizures adversely affect his quality of life. Though little is known about IQSEC2, our geneticist wants us to focus on getting the seizures under control, which has proven difficult. With the sedating effect of the medications, and the post-ichtal effects of the seizures, it's often a challenge just to get Colson to hold his head up. Now that Colson is growing older and getting bigger, he requires adaptive equipment to function and to be able to participate safely in daily activities, such as feeding and bathing. Our insurance does not fully cover the cost of a wheelchair and stander, and will not cover a bath chair or a feeding chair.



In addition, now that Colson is of school age, according to the Individuals with Disabilties Education Act (IDEA), he should be starting pre-school. However, there are no special education pre-schools in our school district that will safely and appropriately meet Colson's medical and academic needs. Colson's father and I are both public school teachers and vigorously looked for both public and non-public schools that would meet Colson's needs. After looking at nine schools, we found an amazing non-public school that would give Colson the medical, therapeutic, social, and academic support that he needs. As a non-public school with state-of-the art therapy equipment and experienced staff, the tuition is expensive, and the school district will only pay for a portion. In addition, they will not pay for a 1:1 instructional aide, which Colson desperately needs to get through the school day and be included with his peers. Colson has already missed six months of school because the tuition and cost of an aide are well beyond the budget of two teachers, heading a family of six, but it would be great for Colson to be able to go to school!

What makes things even more challenging is that Colson's beloved aunt, who plays an important role in Colson's care, was diagnosed in May with Stage 4 uterine and liver cancer, and is undergoing chemotherapy and radiation. This has been devastating news for our family, and we want to make every effort to get Colson everything he needs to improve his quality of life.

Your donations will help to pay for Colson's adaptive equipment, a 1:1 aide in school, and anti-epileptic medications.

Treat a child as though he already is the person he's capable of becoming.
                                                                        -Haim Ginott

We truly appreciate your support!