Home - firsthandfoundation.org

Nathan and Ethan

| March 5, 2015

There’s no doubt that a case grant from First Hand is life-changing for the children who receive assistance. But have you ever wondered about “the rest of the story?” It’s exciting to reconnect with past recipient families and hear how the children are doing now.

Nathan, Ethan and First Hand were all born about the same time. In 1996, the twin boys—at age two—came to First Hand when the foundation was not yet a year old. They were two of the very first children to receive grants from First Hand. Now they have graduated high school and taken college classes. This is remarkable, as they were not typical children. Doctors knew even before they were born that the brothers would have kidney problems, but it was not until years later that an official diagnosis was made—Nathan and Ethan had Bardet-Biedl syndrome.

Bardet-Biedl syndrome is a disorder that affects many parts of the body. For Nathan and Ethan, the disorder produced learning disabilities, speech delays, vision impairment (eventually the boys became legally blind) and, most significantly, kidney disease.

Nathan underwent weekly dialysis at a very young age. Ethan was able to avoid dialysis, but still required an eventual kidney transplant. As a result of kidney failure, the boys were tired and nauseous, and suffered from a loss of appetite, abdominal and joint pain, and violently fluctuating blood pressure.

By the time the twins were two years old, they were being rushed to Children’s Mercy Hospital three times a week for blood pressure problems. Major fluctuations usually resulted in hospitalization in order to stabilize their condition. With another child to care for, the frequent hospital trips took a toll on Nathan and Ethan’s parents.

Children’s Mercy sought ways to help the parents monitor Nathan and Ethan’s health status at home. They recommended the purchase of a blood pressure monitoring system and cuff for the boys so Cherri, their mother, could take daily blood pressure readings herself. The system would significantly reduce hospital visits, thus cutting travel expenses and hospitalization fees. But the family couldn’t afford the system on their own.

This was 1996 and First Hand was just getting started. A hospital social worker contacted the foundation on the boys’ behalf and First Hand agreed to fund the request as two of its very first cases. Imagine the family’s relief!

“I’m not a nurse, so the system was much easier for me to read—it kept us from going to the hospital so often to monitor the boys’ blood pressure,” explained Cherri.

So much has changed since the foundation first learned about the twins so many years ago. Nathan and Ethan have both received kidney transplants and their health has dramatically improved. Both have been active in the Special Olympics and other athletic programs, particularly enjoying swimming. And both love to cook, with specialties that include hot wings and stir-fry.

Cherri is grateful for First Hand’s funding, both for her family as well as others.

“Thank you very much for all the foundation does for families who need your assistance.”

Categorized in: