Rachel Cunningham
Kaya Keuter, a three-year-old Artane local, led the way in a virtual 5k to raise money for life saving surgery alongside her father.
Over a hundred people showed up in person or online to partake in the fundraiser last Saturday July 22, in aid of the surgery Kaya needs in the United States.
“We came up with the virtual 5k idea when we were trying to figure out other ways to get Kaya’s story out there to raise extra money for her surgery,” said Kaya’s dad, Davyn Keuter.
Kaya has Pontine Tegmental Cap Dysplasia (PTCD), a very rare brain malformation that fewer than 100 people have globally.
With no known cause or cure it impacts every aspect of her life, including vision, hearing, cognition, speech, sleep, breathing and mobility.
Kaya faces many challenges, especially her eye condition as corneal nerves provide sensation to the eye, promote healing, and control blinking and tears.
Without these nerves, Kaya’s corneas are vulnerable to ulceration and abrasions, with every corneal ulcer leaving a lasting imprint and further reducing her vision.
When she 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 24/7.
Her eyes are lubricated with eye drops hourly and with an ointment while she sleeps. Most weeks she is also on antibiotic eye drops.
However, these treatments aim to stabilise her eyes, rather than treate the underlying cause. Without surgical intervention, blindness is inevitable.
As Kaya is already profoundly deaf, her family do not want her to go blind knowing that they could prevent it, which is why they are turning to Indianapolis for Corneal Neurotization (CN) surgery.
As the surgery will require significant funds, Kaya’s family are hoping to highlight their daughter’s story so that she can benefit from this life-changing surgery.
Paediatric CN surgery is only available in a few places worldwide and, unfortunately, it is not currently available in Ireland
Kaya’s consultant at CHI Temple Street has referred her to a team in the United States at Riley Children’s Hospital in Indianapolis, where this procedure has been successfully performed.
“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 but we are willing to use all our savings and will do whatever it takes to make sure Kaya doesn’t go blind,” Kaya’s parents wrote on her GoFundMe page.
“Basically, how the virtual 5k works is, no matter where you are in the world, you can get involved. The benefit is that you don’t have to physically run with Kaya or me to join in,” explained Davyn.
“My hockey team from Clontarf Hockey Club joined in with us along the Clontarf promenade but then other people around the world joined in as well.
“We asked people to donate and do a 5k walk or run and to post a selfie on Kaya’s social media pages once they’ve finished.
“Her GoFundMe page will remain up and running until we reach our fundraising target.”
Funds will be used for CN surgery, including hospital charges and doctor fees and also for flights, accommodation, travel insurance, etc.
“I ran with Kaya in a buggy, she was with me the whole way, which is why we chose a nice flat route for the run.
“Kaya is like any other typical child, she has her good days and her bad days. She loves doing normal things, like playing with toys, reading books, watching tv and she loves being outside and going to the park.
“Her life is hard but she has a lot of fun too; she’s a normal little girl,” Davyn concluded.
To donate to Kaya’s cause, visit: https://www.gofundme.com/f/sight-saving-surgery-for-kaya.
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