Sight saving surgery for Kaya

Kaya, our happy 3 year old, has a very rare brain malformation, Pontine Tegmental Cap Dysplasia (PTCD). Worldwide, fewer than 100 people have this same condition. With no known cause or cure it impacts every aspect of her life: vision, hearing, cognition, speech, sleep, breathing and mobility.

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 8 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. These current treatments are all about stabilizing 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.

Without surgical intervention, blindness is inevitable. Kaya is already profoundly deaf. We do not want her to go blind knowing there's a way we could've prevented it. 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 there 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.

Please help us save Kaya's vision

Funds will be used for CN surgery (hospital charges + doctor fees) €65000; flights €3300; accommodation €1400; travel insurance, etc. €300.

Thank you for your kindness and generosity,

Andrea & Davyn