Family of youngster with fatal disorder needs help

Fayette County residents Claire and Roger Starkey are on a mission for their granddaughter, 2-year-old Katie Belle Graham, who was diagnosed late last year with mitochondrial disease. The Fayette couple are helping put together a fundraiser for Katie to help her parents meet the many financial obligations associated with the disorder that is considered fatal.

A raffle and rummage sale to assist Katie’s family will be held June 1 from 9 a.m. until 3 p.m. at the Fayette Shrine Club, located at 205 Ellis Road in Fayetteville.

A wealth of Fayette County businesses are donating items for the Hope for Katie raffle. A rummage sale will be held at the family-friendly event. Starkey said organizers are relying on residents to help donate items for the rummage sale. But there is more to the June 1 event. The Shriners property will be the site of numerous activities for the whole family, Starkey said.

Katie and her parents, Teresa and Dustin Graham, live in Henry County while her grandparents live in Fayette. Roger is a deputy with the Fayette County Sheriff’s Office and Claire is an investigator with a local school system and a former Fayette deputy.

“When my granddaughter, Katie, failed to reach developmental milestones around the time she was six months to a year old, her parents, Teresa and Dustin Graham, sought guidance from their pediatrician,” Claire said. “At that time, Katie was diagnosed as having strabismis, or lazy eye, in both eyes. Katie had surgery to correct her vision and was given corrective eyewear to improve her vision. Her eyes did not respond to the surgery the way the doctor's hoped and Katie underwent additional surgery.”

Claire noted that Katie began to exhibit additional obstacles over time.

“She had trouble walking, stumbling and falling when there was nothing in her way,” Claire explained. “Katie could not self-feed and would constantly choke and gag whenever she was eating and she still made no attempt to talk or mimic sounds.”

Finally referred to a pediatric geneticist, Katie was diagnosed with a mitochondrial disorder, though the specific type of the debilitating and often fatal disorder has yet to be determined.

“Katie requires full-time care so Teresa stays home with her. They tried to apply to daycare centers so Teresa could have a few hours to herself one or two days a week but no one would accept Katie because of the level of care she requires. Dustin works constantly to support the family and to provide insurance for them,” Claire said.

Claire and Roger are part of a growing group of citizens and businesses that have stepped in to help lend a hand to this family in need. The June 1 fundraiser is an example of that concern.

“Most people might question why this family needs financial assistance when they have health insurance. The truth is that insurance does not cover all or not any of the costs for genetic testing, therapy, medications or supplies needed to diagnose or treat Katie's condition,” said Claire. “They applied for disability for Katie back in November but they have not received any help to this date. They worry each day about their finances and how they are going to be able to care for Katie as her condition worsens. There is currently no cure for Katie's condition but Teresa and Dustin are fighting to keep Katie comfortable and are embracing each precious second they have left with her.”

A fundraising account under the name of Katie Belle Graham Donation Fund has been established at Wells Fargo Bank. And residents and businesses are encouraged to visit the “Hope for Katie” page has been established on Facebook.