Help us save Freddie's sight!
Our darling Freddie will go blind unless we can get him specialised surgery in the USA.
Auckland
Freddie, our happy 22-month-old boy, has a very rare brain malformation, Pontine Tegmental Cap Dysplasia (PTCD). Worldwide, fewer than 100 people have this condition. With no known cause or cure it impacts every aspect of his life: vision, hearing, cognition, speech, and mobility.
Freddie faces many challenges, but the most immediate concern is the continuing degeneration of his eyes due to Neurotrophic Keratopathy. Lacking sensory nerves and natural lubrication, his corneas are extremely vulnerable to ulceration and abrasions. Freddie has already developed scars on his eyes. To temporarily minimise ongoing damage, his eyelids have now been partially sewn shut.
Without surgical intervention, blindness is inevitable. After numerous medical consultations, we have learned that Corneal Neurotization (CN) surgery is Freddie's best hope.
CN surgery is only available in a handful of places worldwide and is significantly more complex for a PTCD child. As such it is not available in Australasia.
Riley Children's Hospital in Indianapolis, USA has successfully performed CN on children with PTCD. Doctors there are ready to operate on Freddie.
We need to raise NZ $144,000 for Freddie's surgery and associated costs. This is a crazy amount, but we can't bear to watch Freddie go blind and we're willing to do whatever it takes.
Please help us save Freddie's eyes.
Use of funds
Funds will be used for CN surgery $125,000*, flights $6,800, car rental $2000*, travel insurance $1000, contribution towards accommodation and living costs $2000*, and 5% Givealittle fee $7,200. *Based on March 7 exchange rate.
Latest update
Fred again! 23 June 2024
As it is Matariki, Māori New Year, we feel it's a perfect time to send an update on Freddie.
It's been a year since he received corneal neurotization surgery (CN) as a result of your incredible generosity. We've had big ups and downs since then but we always knew we would. The aim of CN is to promote feeling, healing & sensation in the eyes. The process of nerve activation post surgery takes 12-18 months minimum, so for the past year Freddie's eyes have still been vulnerable to damage. Over his short life he has suffered several eye infections & abrasions leaving him with significant scarring which has impaired his vision. One of the potential outcomes of CN was that this scarring might reduce. At Tuesday's eye check up Fred's opthomologist reported that he's never seen his eyes looking so good. The scarring has almost gone, red reflexes are shining through, the eyes are beautifully white & clear with no defects. We are all very confident that Freddie is slowly beginning to gain sensation in his eyes. We've been observing an increase in his overall eye health & enjoying many weeks of zero eye problems & no need for hospital appointments or intervention. There's still a long way to go but the changes we're seeing are SO exciting, giving us great hope for the future. In other news Fred has progressed from crawling to walking with a little frame & he has started at preschool, which he loves. We're so grateful & want to thankyou all again for your support.
Luv, M,J, F & L xox
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