Mitochondrial Disease: Katie Belle Graham, parents face daily challenges
Katie Belle Graham’s birthday on Nov. 10, 2010, was tough.
At 9 pounds, 9 ounces, she struggled through the birth canal, became lodged and was briefly without oxygen. After some extra time for their baby girl in neonatal intensive care, her parents, Teresa and Dustin, were thrilled to bring her home.
They soon found that Katie had difficulty focusing on faces.
Friends assured them this was normal, and her doctor agreed. If she didn’t improve by 6 months, he would test her further. Meanwhile, Katie’s grandmother had a routine eye exam and discussed Katie’s eyes with her own ophthalmologist.
The ophthalmologist convinced Katie’s grandmother the symptoms were not normal and urged them to seek help immediately.
Katie’s eyes crossed. She developed estropia, a condition where the eyes turn inward. Diagnosed as far-sighted, Katie began wearing glasses at 6 months of age. Four months later she underwent surgery to straighten her eyes, but will always wear glasses.
Never reaching developmental milestones, Katie did not crawl, sit up, or hold her bottle. Feeding her seemed to take forever and often resulted in intense vomiting. She had tremors because of poor muscle tone.
At birth, Katie’s hearing was tested and found to be normal. However, an ENT Specialist tested her hearing again 18 months later and she failed.
Babies Can’t Wait, an organization that performs in-home therapy for children, confirmed that Katie was behind in every area of development.
She was referred to a neurologist, but had to wait six months for the first available appointment. Because of her difficult birth and lack of oxygen, her pediatrician ordered an MRI to check for cerebral palsy. Results took six months but revealed that Katie did not have cerebral palsy.
She did have dangerously high levels of lactic acidosis – acid in the blood – that confirmed the devastating diagnosis of mitochondrial disease. There is no treatment or cure.
Doctors prescribed a Mito Cocktail, a combination of vitamins to keep Katie as strong as possible. Mitochondrial disease can affect all bodily systems, thus Katie sees an army of doctors – geneticists, neurologists, pediatricians, ear/nose/throat specialists, cardiologists.
Katie is in pain from high levels of acid in her muscles. She finally learned to walk with the help of orthotics, but will never speak. She babbles and squeals and does know her mom and dad.
“She loves us,” Teresa shares. “She hugs and smiles and wants us to watch her. I’m thankful for this.”
Because Katie has a weak immune system, the family stays home to keep her from being exposed to a variety of germs. The slightest fever sends her to a children’s hospital for several days.
Katie’s prognosis? “Not good,” doctors say.
The disease is fatal, although doctors refuse to say how long Katie will survive. She is two-and-a-half-years-old now, and the possibility of her living into her teens is remote. Teresa and Dustin are determined Katie will know love.
The family has insurance but it does not pay for all of Katie’s needs. She has Medicaid but that does not necessarily pay for tests doctors order. Medicaid recently denied payment for two tests and the Grahams had to pay $30,000 out of pocket.
Many people are already following Katie’s journey on Facebook at Hope for Katie. Friends and businesses have planned multiple fundraisers, and every penny is needed and appreciated.
The Katie Belle Graham Donation Fund has been set up at Wells Fargo Bank. Donations can be made at any branch of Wells Fargo.
More fundraisers are planned.