Five-year-old girl’s death highlights dangers of undiagnosed type 1 diabetes

On July 11, Kycie Jai Terry died from undiagnosed type 1 diabetes at just five years old. Her tragic death illustrates how dangerous undiagnosed type 1 can be, and why it is paramount to know the warning signs of the disease.

Kycie’s story is a heartbreaking one. On Sunday 25 January, she complained to her parents, Jamie and Josh, about a headache.

Three days later, after sleeping all day on Monday and developing stomach pain and a sore throat, mother Jamie took Kycie to their doctor on Wednesday. Kycie was given antibiotics for strep throat.

After failing to show any improvement, Kycie was taken to the ER on Friday, before being transferred to Primary Children’s Hospital, Salt Lake City. Her blood sugar was 63.8 mmol/l, and Kycie had a seizure on the way to the hospital.

Kycie was experiencing diabetic ketoacidosis and entered a coma upon arriving at the hospital. The original diagnosis of strep throat from Kycie’s doctor was shockingly inaccurate.

Kycie remained in the coma for 24 hours, but regained consciousness. Her stay in the hospital lasted 111 days, where she was treated until 15 May, when she returned home to St. George with her family.

Despite doctors saying said she would have zero quality of life, she was able to roll over, wiggle her toes and even experience riding her bike, albeit with a lot of help from her family.

After her condition declined, Kycie was admitted back to Primary Children’s Hospital on June 27. She was put on a ventilator, but was able to breathe on her own again on 4 July. Kycie’s family welcomed her home again after she was discharged on 9 July.

Kycie died on Saturday 11 July in her father’s arms. Her funeral took place on Thursday 16 July at The Church of Jesus Christ of Latter-day Saints’ Boulder Ridge Stake Centre, St. George.

The Terry family documented Kycie’s struggle on Facebook, and the Kisses for Kycie page has over 55,000 likes. Not only has brave Kycie inspired the entire diabetes community with her courage, but her story raises awareness of undiagnosed type 1 diabetes.

During that first week Kycie felt ill, it would have been easy to assume that her symptoms were attributable to a cold or the flu.

However, as listed below, the warning signs of type 1 diabetes are varied.

The 4T’s of type 1 diabetes: Toilet, Thirsty, Tired and Thinner – are the major symptoms exhibited when somebody may have undiagnosed diabetes.

Additionally, the symptoms of diabetic ketoacidosis, which include the stomach pain that Kycie experienced, are important to note as DKA can occur prior to a diagnosis of type 1 diabetes being made.

While these symptoms may seem fairly innocuous at first, it is essential that you, or a member of your family, see your GP urgently if they develop. DKA can lead to diabetic coma and often develops over a 24-hour period.

In 2012, Nicky Rigby died from undiagnosed type 1 diabetes, having previously attributed her symptoms to motherhood. Despite being exhausted for five months following the birth of her child, and losing weight, she thought all mothers got tired the way she was.

The deaths of Nicky and Kycie are heart-wrenching examples of why undiagnosed type 1 diabetes is so dangerous, and how quickly symptoms can develop.

Kycie’s story will serve as inspiration to people all over the world – a fundraising campaign for Kycie’s family has raised $55,000 – and her bravery will not be forgotten.

Photo courtesy of the Terry family

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Jack Woodfield

Jack is Deputy Editor of Diabetes.co.uk and the award-winning Low Carb Program. He works hard, plays fair and sleeps whenever possible. He also has type 1 diabetes, doesn't mind being called a "diabetic", and once won a talent show for dancing to Dario G’s 1997 hit “Sunchyme”.

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