‘It keeps us afloat, keeps us going’

When the critical funds started rolling in at a Mercer Island Country Club tennis championship tournament, Jill Hawkins was feeling amazed and grateful for the support Islanders were sending her family’s way.

The Hawkins clan now grasped a life-affirming trophy in the form of significant funding to place into its nonprofit FAM177A1 Research Fund aimed at an ultra-rare genetic disease that affects two of the family’s children, Charlotte, 18, and Cooper, 12.

“We started a foundation to unite the patient community and align the science and researchers throughout the world so that we can accelerate treatment and ultimately a cure for this disease,” said Jill, who added that they are aware of a handful of patients in the United States and a couple dozen worldwide who are faced with the disease.

During the fundraising facet of the tennis event, which this year benefited the Hawkins’ fund, the Leung family’s Aidan’s Red Envelope foundation, Radiator Whiskey and other benefactors stepped up to lend an immense monetary hand. The Leungs’ large donation helped the Hawkins reach the matching threshold put forth from an Islander to double the funds going their way.

Nancy Leung said they’re glad to present the organizational grant to the Hawkins’ fund, which Jill and her husband Doug launched within the last year and a half. They introduced Charlotte and Cooper to the community at the club event, and Jill has been a tireless supporter of her kids and others who suffer from the disease, Leung said.

Jill noted about the invaluable help they’ve received from Islanders: “It keeps us afloat, keeps us going. We’ve been dealt a tough hand, but the support of our friends and neighbors really gives us so much joy and so much hope.”

Charlotte and Cooper have been newly diagnosed with the disease, which is caused by a non-functioning FAM177A1 gene, said Jill, who added that the pair have experienced neurodevelopmental issues, such as intellectual disability, severe language delays, motor issues, seizures, autism and other medical issues. The couple’s oldest child, Nash (who is attending college), is unaffected by the disease.

Both Charlotte and Cooper were born healthy, but started missing developmental milestones. Jill explained that after testing and genetic panels didn’t present a diagnosis, they contacted the National Institute of Health’s Undiagnosed Diseases Network at Stanford University that is known to “solve medical mysteries,” she added.

Following several rounds of genome sequencing, the team revealed the cause of the disease. Jill and Doug each have functioning and non-functioning copies of the gene, and each passed two non-functioning copies to Charlotte and Cooper; Nash received two functioning copies.

“We now know that (the gene) is very important for health, and researchers are trying to figure out how to replace the gene,” Jill said.

Through the FAM177A1 Research Fund, Jill hopes that patients affected by the disease can flourish and experience a brighter tomorrow.

The Leungs’ Aidan’s Red Envelope foundation also reaches out to others by presenting grants to families and meaningful nonprofits that, too, are helping pave a path for “enriching lives of children with disabilities.”

Nancy and her husband Kevin’s son Aidan died of a lengthy illness at age 19 in May of 2022. He had multiple disabilities diagnosed with cerebral palsy after birth and was a senior at Mercer Island High School (MIHS) when he passed.

Both Jill and Nancy met while playing tennis at the country club, and coincidentally, Aidan and Charlotte were classmates in the MIHS special education program. Charlotte is a MIHS class of 2023 graduate and will move into the school district’s Pathways adult transition program, and Cooper is a seventh-grader at Islander Middle School in a highly supported classroom.

Whenever Nancy brought Aidan along when she was presenting grants, he was all smiles and beaming with pride to be assisting others.

Nancy knows that it’s tough for families who have kids with special needs, and said, “It’s just great to be able to help other people and to know that we’re doing it in (Aidan’s) name and in his honor now.”

For more information, visit https://www.fam177a1.org/ and https://www.aidansredenvelope.org/