Vision for Ciro

$33,974 donated

Given by 222 generous donors in around 10 months

Ciro has a rare inherited retinal degeneration ,and without gene therapy (a surgery done in London) he will become blind by the age of 5.

Somerfield, Christchurch

Our son Ciro [SEER] + [OH] is a 2 year old boy with Leber congenital amaurosis, a rare inherited retinal degeneration, owing to genetic deficiency of AIPL1. This 1 in a million condition results in progressively severe irreversible blindness at young age, but some children have benefitted from gene therapy which is a medicine that can compensate for their specific genetic deficiency.

Hopefully this will help him improve his low vision, and most importantly, retain it for longer.

It's a big decision because they only have few spots available for this treatment and it's unlikely they will get funding for more; Ciro is eligible because he is still little and has healthy photoreceptors needed for the gene therapy (normally they deteriorate at 4-5 and it's too late then); there is a lot of theoretical risks, but it would take too long build precedents. We need to act now.

This new medicine has not been administered to many humans (only 4 children so far) and is not licensed, but is being made available to Ciro as a Special treatment on the basis of a Hospital Exemption. The surgery will be in London at the Evelina Children’s Hospital and we need to be there at least 6 weeks. With your help we are going to cover flights for Ciro's family, accomodation, food, medications and other unpredictable costs from theoretical risks from the treatment.

All funds raised will go towards this, even if we do not reach the full amount we will find other ways to make up the rest.

Use of funds

With your help we are going to cover flights for Ciro's family, accomodation, food, medications and other unpredictable costs. All funds raised will go towards this, even if we do not reach the full amount we will find other ways to make up the rest

Almost ready to go home 15 July 2024

It's been five weeks after the surgery, and Ciro has shown amazing progress with his vision.

His right eye, first surgery, is still the strongest, and he gets frustrated if you cover that one. A good sign that he can see and wants to use it.

The left eye: I think there has been some changes. It's hard to say because of the predominance of the other eye, but he has been asking even more questions, picking up on all sorts of drawings and identifying them, improving the range of colors he can see and most of all, a huge increase in his confidence.

For those who have asked, his vision will improve to a certain point but it won't be perfect. But it has certainly changed immensely since last December. They estimate the vision reaches its peak and remains estable up to 6-7 months after surgery. So we could be reaching his first eye potential, let's see what happens with the second one.

Let's hope the doctor confirms everything is still ok on Monday and then we will be officially dismissed to go home on Tuesday night.

Thanks everyone for asking about Ciro, about me, and the rest of the family in NZ.

We are well, healthy and still sane. We had lots of fun visiting friends in London, North of England and France. They all spoiled us kindly, showed love and patience. Seeing where they live and spending time with them was the fuel and boost I needed to keep me going.

And we also went to Legoland. a real treat for Ciro for his hard work and resilience.

Thanks again 💛🧡🧡💛

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