Dedicated. Enthusiastic. Committed to our goals. Those are just a few ways to describe the volunteers that make up the Tyler Foundation. Our team manages every aspect of the organization. We work together to serve families whose children are undergoing treatment for epilepsy at Children's Hospital Boston and UMass Memorial Children's Medical Center.
Our board of directors are responsible for ensuring excellent management of the organization. Board members are asked to make decisions in the areas of finance, organizational partnerships, community and corporate relations, requests made to the organization, fundraising efforts, and event planning. All board members are volunteers and many assist the organization based on their professional areas of expertise.
We are proud to serve the families who need our assistance!
How the Tyler Foundation helps families
- Supplying meals gift cards to families of children who are inpatients at Children's Hospital Boston or UMass Memorial Children's Medical Center.
- Donating gas cards to be used by families who are transporting children to doctor's appointments and hospital visits related to epilepsy.
- Providing financial assistance for the purchase of therapeutic equipment used in the treatment of children suffering from the delayed development caused by the brain malformation and seizures - items such as bathseats, seizure monitors, and other items not covered or paid for by insurance.
- Purchasing ketogenetic diet supplies including scales and required books.
- Bridging the gap for fixed expenses including electricity bills, rent, and car insurance.
Why the foundation was established - Tyler's Story
The Tyler Foundation was first established in 2006 by Erik and Heather in honor of their son Tyler who was diagnosed with epilepsy at three weeks old. Seizures were a result of a brain malformation. Born with epilepsy, having over 20 grand-mal seizures a day, he underwent brain surgery at 15 months old. On October 19, 2005, he had a complete anatomical right hemispherectomy (they removed the right half of his brain) at Children's Hospital Boston. He was diagnosed post-surgery with hemimegalencephaly - which essentially means that one side of his brain, his right side, was larger than his left side. Since the surgery has hasn't had any seizures (knock on wood), giving him a whole new life to live. A few weeks after the brain surgery, Tyler developed Hydrocephalus, a condition resulting in a spinal fluid build-up in the right cranial cavity. A shunt had to be implanted in the right side of Tyler's skull to drain the fluid. It is something he will have to live with the rest of his life. He is currently receiveing physical therapy, occupational therapy, speech therapy, hippotherapy and accupuncture several times a week to help him regain the skills he needs. He is a remarkable little kid, and "One Tough Cookie".
Prior to his surgery we spent days, and weeks at a time in
the hospital for tests, and emergency room visits. The entire length
of his hospital stay for the surgery was 16 days. Tyler then went to
rehab for an additional 1 month stay.
Each day we were charged $8 for parking, and had to find a place to
pay for our breakfast, lunch and dinner. If it had not been for our loving family and friends we
would not have known the comfort of home-cooked meals to warm our stomachs. We also were
very lucky to receive free parking passes while in the hospital, but that did not cover our parking expenses while in rehab. We were very fortunate to have been able to afford the parking fees,
the meal expenses and the cost of living while in the hospital. We soon found out that was just
the beginning of those expenses.
As Tyler progressed in his therapy, he required several pieces of medical equipment, a stander,
a gait trainer, a special chair, several pairs of AFO's (foot braces), and many other smaller pieces
of therapy equipment. Again, fortunately we had insurance, which covered these costs.
The stander would have costs us nearly $5,000 without insurance. The gait trainer would have
cost us another $3,000. Each set of AFO's that Tyler needs would cost us over $1,500 a pair, and most kids require 2 sets per year as they grow. The list goes on and on.
Throughout all this, we have been privileged to meet so many sweet kids who have similar issues, or sadly worse. These kids are the strongest kids we have ever seen. They have been through so much, and continue to do it with a smile on their faces.