Alaska’s first ‘Walk to Cure Diabetes’ is set for May 11

WASILLA — At just 19 months, Ellie Ferguson isn’t talking much. But she already has a story to tell that can help others.

Ellie is special because at just 9 months old, she became one of the youngest Alaskans with a diagnosis of Type 1 diabetes. Now her family is sharing their story in the hope it will help other families recognize the warning signs.

Katie and Jeremiah Ferguson live off Vine Road outside of Wasilla and commute to Anchorage for work. So while big brother Jonah, 10, goes to school, Ellie spends most days in her grandparents’ care.

Katie said their lives changed permanently following a worried phone call from grammy saying baby Ellie wasn’t herself that day. Her usually bubble granddaughter was tired, her breathing was labored and she was drinking a lot of water.

After work that night, Katie said they took their daughter to Urgent Care, where staff immediately recognized her symptoms and a check of her urine confirmed Ellie was experiencing diabetic ketoacidosis.

“She was going into a diabetic coma,” her mom said.

Due to her undiagnosed diabetes, Ellie also was extremely dehydrated from the high levels of ketones in her body, Katie said. So doctors at Urgent Care tried to put in an IV to give her fluids. But when they couldn’t get the IV into her miniature veins, Ellie was rushed by ambulance to Mat-Su Regional Medical Center, her mom said.

For two more hours while hospital staff tried to insert the IV into veins in her arms, neck, wrists, ankles, forehead and even drilling into her shins, baby Ellie laid in the bed, still and silent.

By that time, Katie said her daughter was so ill she endured it all and never made a sound.

“It was a very, very scary thing to see our child laying there,” she said. “We just had to stand there and watch.”

Finally, a central IV line was successfully placed into her neck.

“Ellie was pumped with fluids till her face was so puffy that she could barely see, but she was re-hydrated,” Katie wrote on Team Ellie Bellie’s page for the Juvenile Diabetes Research Foundation’s “Walk to Cure Diabetes Team.”

It’s the first time for the event in Alaska, designed to raise funds and awareness for Type I diabetes. The 5-K “Walk to Cure Diabetes” begins at 11 a.m., May 11 on the Delaney Park Strip in Anchorage. Registration starts at 9 a.m. at 10th Avenue and P Street.

A new normal

With the IV in place, mother and child were transported by helicopter from Mat-Su Regional to the Children’s Hospital at Providence in Anchorage. There, Ellie was hospitalized for five days, including three days in intensive care.

Doctors at Providence told her family they thought Ellie’s blood sugar had been high for the past three months — about the time she began eating solid foods, Katie said.

Distinct from Type II diabetes, Type I diabetes is a genetic condition for which Ellie has all three markers, her mom said.

“Type I is your pancreas just doesn’t work,” she said. “It’s this way for the rest of her life.”

At just 9 months old, the girl is the youngest patient her doctor knows of in Alaska with Type I diabetes, Katie said.

It’s a blessing that the diagnosis came so early in Ellie’s life, her mother said during an interview April 27 at their home.

“She’ll never know any different,” Katie said. “This is her normal.”

The baby bling on her left wrist is a medic alert bracelet that lets others know that normal to Ellie is holding out her small hand to have a needle prick blood test five or six times a day. Normal for Ellie is getting insulin shots after every meal and every snack. Normal for her are blood sugar levels that fluctuate in just a few hours between 39 and 500, the highest her meter tests, Katie said. Plans are in motion to switch from insulin pens to give Ellie the doses she need throughout the day to an insulin pump, which will allow more precise and constant dosing, her mother said.

The good news is Type I diabetes can be managed with diet and insulin injections, Katie said. To that end, they keep a log of what Ellie eats, her blood sugar levels, how much insulin she received and where each shot was given.

Brother Jonah said one of the hardest parts of the family’s new reality is sticking with regular times for meals and snacks since his sister can’t eat until three hours after her last shot.

He said sticking to the food schedule and remembering not to eat in front of his sister can be difficult.

But Ellie’s story has already helping others.

While reading an email grammy sent after Ellie’s diagnosis, a friend of the family saw the signs and took her grandchild to the doctor where tests confirmed Type I diabetes, Katie said.

Some of those signs of Type I juvenile diabetes are more wet diapers, vomiting and bad breath.

“Type 1 diabetes can appear at any time with little to no warning,” she said. “Our story can help other people recognize the signs.”

People can still sign up to participate or donate to the Juvenile Diabetes Research Foundation International’s 5-K “Walk to Cure Diabetes” at 11 a.m., May 11 on the Delaney Park Strip in Anchorage. Registration starts at 9 a.m. at 10th Avenue and P Street. To donate to an individual walker start a team, visit www2.jdrf.org. Visit Team Ellie Bellie’s fundraising page at www2.jdrf.org/goto/teamelliebelly.