In 2012 at the age of 9, Ethan Jeffcoat was diagnosed with Adrenoleukodystrophy , a very rare genetic brain disease. The doctors expected him to live only a year. Today Ethan remains at home under the care of his mother Robyn, and his father Daryl, needing 24/7 attention.
Ethan’s two older brothers, Wyatt and Grant, were tested for the same disease when Ethan was diagnosed. Both boys have the disease; however it was not progressing in their brains.
But a few months ago, just before his 20th birthday, the lesion on Wyatt’s brain begin to grow. He underwent a stem cell transplant in hopes of stopping the progression of the disease so he didn’t end up like his brother Ethan, who is on a feeding tube and unable to move or communicate.
Wyatt spent six weeks in Stanford Children’s Hospital, and was released on June 7 to spend the next 100 days in a nearby hotel. He makes visits twice a week to Stanford for monitoring and testing during this period, needing to always be within 30 miles of the hospital in case anything goes wrong. He must live in a sterile environment, follow careful instructions about food preparation, and be under 24/7 supervision.
Robyn, Daryl, and older brother Grant are providing all of the primary care for Ethan and for Wyatt. Medical and housing costs not covered by insurance, the 200-mile round trip between the two boys, and extra concerns like specific groceries, cleaning supplies and things needed to make a home-away-from-home are taking their toll on the family.
Ethan continues to provide light to all who are around him every day, and it is a miracle he has lived this long. Wyatt has a great chance of combating this disease, having undergone this intense procedure. The Jeffcoats have immense faith but their journey isn’t easy. We have the opportunity as a community to support this amazing family and to help them in a real way.
Ethan’s two older brothers, Wyatt and Grant, were tested for the same disease when Ethan was diagnosed. Both boys have the disease; however it was not progressing in their brains.
But a few months ago, just before his 20th birthday, the lesion on Wyatt’s brain begin to grow. He underwent a stem cell transplant in hopes of stopping the progression of the disease so he didn’t end up like his brother Ethan, who is on a feeding tube and unable to move or communicate.
Wyatt spent six weeks in Stanford Children’s Hospital, and was released on June 7 to spend the next 100 days in a nearby hotel. He makes visits twice a week to Stanford for monitoring and testing during this period, needing to always be within 30 miles of the hospital in case anything goes wrong. He must live in a sterile environment, follow careful instructions about food preparation, and be under 24/7 supervision.
Robyn, Daryl, and older brother Grant are providing all of the primary care for Ethan and for Wyatt. Medical and housing costs not covered by insurance, the 200-mile round trip between the two boys, and extra concerns like specific groceries, cleaning supplies and things needed to make a home-away-from-home are taking their toll on the family.
Ethan continues to provide light to all who are around him every day, and it is a miracle he has lived this long. Wyatt has a great chance of combating this disease, having undergone this intense procedure. The Jeffcoats have immense faith but their journey isn’t easy. We have the opportunity as a community to support this amazing family and to help them in a real way.