Walk to save toddler’s eyesight

Join a 5km walk to save three-year-old Kaya Barker’s vision.
Kaya was born with a brainstem malformation, Pontine Tegmental Cap Dysplasia (PTCD), a condition so rare there are fewer than 100 people with it globally.

According to Kaya’s mother, Andrea Barker this impacts every aspect of her life, including hearing, breathing, sleep, and mobility. She added another area that is impacted is vision, and without nerve transplant surgery, the three-year-old will lose her vision.

The 5km walk will be held on Saturday, July 22 at the Renishaw Forest (meeting at Renishaw Village Café) from 8.30am. It is aimed at raising money for Kaya’s medical costs and creating awareness.
Andrea grew up in Scottburgh where her family still resides. She now lives in Ireland with her husband Davyn Keuter and their two girls.

In an effort to save Kaya’s vision, the family is calling on locals to join the 5km walk.
In their plea on their GoFundMe account, the couple said Kaya faces many challenges, but the most difficult to manage is her eye condition.

“Corneal nerves are responsible for many different functions, they provide sensation to the eye, promote healing, and control blinking and tears. Lacking these nerves, Kaya’s corneas are extremely vulnerable to ulceration and abrasions. Every corneal ulcer leaves a lasting imprint and reduces her vision. This is the only aspect of Kaya’s PTCD that will get worse the older she gets, no matter how good we are at managing it. When Kaya was eight months old she had a procedure to her left eye due to a non-healing ulcer which left scarring that has permanently impaired her vision. To prevent further damage, she has had plugs placed in her tear ducts and she wears soft bandage contact lenses 24 hours, seven days a week. Her eyes are lubricated with eye drops hourly, and with an ointment while she sleeps. Most weeks she is also on antibiotic eye drops. These current treatments are all about stabilising her eyes, rather than treating the underlying cause. Despite our best efforts, Kaya is a very frequent visitor to the eye department at our local hospital,” said Barker.
She added that without surgical intervention, blindness is inevitable.
She said Kaya is already profoundly deaf, saying that they do not want her to go blind knowing it could have been prevented.

“Corneal Neurotization (CN) surgery is the answer. Paediatric CN surgery is only available in a few places worldwide and is significantly more complex for a child with PTCD. Unfortunately it is not currently available in Ireland. Kaya’s consultant at CHI Temple Street has referred us to a team in the United States. This surgery has been successfully performed on other PTCD children at Riley Children’s Hospital in Indianapolis. Surgeons are willing to operate on Kaya later this year. Unfortunately our medical insurance will not cover the full cost of this surgery abroad. We need €70,000 for Kaya’s surgery and associated costs. We are required to be in Indianapolis for appointments pre-op and post-op which means a 12-day round trip. This is a lot of money (we know), but we are willing to use all our savings and will do whatever it takes to make sure Kaya doesn’t go blind,” she said.
For more information on Kaya’s journey, visit www.gofundme.com/f/sight-saving-surgery-for-kaya

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