This is Pamela Digby and her little sidekick Milo

Pretty Big Deal….

The “mother” of our A-T Family

Over thirty years ago, there were families scattered all over the U.S., feeling helpless, faced with a devastating disease so rare that even most doctors didn’t know much about it. In 1988, long before the days of the internet, one of those moms set out to change that.

Her name is Pamela Skyberg Digby, and the disease—Ataxia Telangiectasia. Pamela is kind of like the “mother” of our A-T family, and she is queen of fundraisers for the A-T Children’s Project.

Having a son with A-T, named Jared, in 1988 Pamela began scouring through phone books calling pediatricians all over the place, trying to connect with other children and families fighting this rare disease, long before ATCP was even founded.

As we all know, Pamela reaches out to lend a knowing ear and a helping hand to all of our A-T families, taking time to answer endless questions, connect families to resources, and share her personal experiences through tears, as we face a devastating disease we had never heard of until our little A-T warriors were diagnosed.

In addition to her volunteer work, Pamela celebrates every birthday in the A-T family with a photo and interview feature called ‘Pretty Big Deal’, shining a spotlight on A-T kiddo’s accomplishments and resilience. This labor of love was started by her beloved son Jared many years ago, and she carries it on to this very day.

In conversation with a few other A-T families, they agree that Pamela is one of a kind.

“I remember how lost I felt after learning our little girl had this horrifying disease, and she messaged me, welcoming me to the parent support group she runs, and that simple act of reaching out and connecting helped our family not feel so hopeless and alone,” another mom said. “She has connected hundreds of families who have a child with Ataxia Telangiectasia, fundraises relentlessly for a cure, and offers support and guidance to all of us. She is an angel walking among us and we are so grateful to have her in our lives.”

And now is our chance to help her! Pamela is in desperate need of a vehicle. Her vehicle is shot due to a failed transmission that will cost about as much as a used vehicle and the vehicle she has borrowed has over 495,000 miles on it and isn’t very reliable and it is unsafe to travel.

Pamela is a breast cancer survivor and is living on a fixed income. But she dedicates countless hours to help search for a cure for our A-T warriors, even though Jared gained his angel wings many years ago.

“Before Jared passed, he made Pamela promise to continue to raise funds to find a treatment or cure for A-T. Pamela is fulfilling that promise and works daily raising money for A-T. Pamela’s husband also passed a few years after her son passed,” said another A-T mom Pat Dodson.

The following are just a few things she does to volunteer every year:

#1 - Pamela organizes a Some Run Seagoville each October at Seagofest. She also has a fundraising booth during the week at Seagofest to raise awareness and funds with all proceeds benefiting the A-T Children’s Project

#2 - Honda Denton and Toyota Denton are major sponsors of the Some Run Seagoville and Pamela works diligently to offer $2 chances to win a new vehicle donated by the dealerships with all proceeds benefiting the A-T Children’s Project.

#3 – Pamela is a volunteer coordinator for the A-T volunteer squad. She coordinates with various running organizations for different fun runs to provide volunteers in exchange for a donation to the A-T Children’s Project.

#4 - Pamela organizes and attends A-T Tuesday each 3rd Tuesday of the month at Chilis and all donations go to the A-T Children’s Project.

#5 - Pamela organizes a booth for the Mayfest Seagoville each May and all proceeds go to the A-T Children’s Project.

Please consider donating to Pamela’s GoFundMe so she will be able to purchase a reliable vehicle.

Thank you!

Kayleen Holder & Pat Dodson