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Nico - Spain

Help us on our mission of finding a cure for INAD/PLAN. Nico’s family is fundraising to help us bring our gene therapy program to a clinical trial:

Nico R.

6 Years Old | Madrid, Spain

About This Superstar

Age of Diagnosis
Nico was diagnosed on the 27th of February 2019.

How INAD had Impacted Their Life
Accepting, understanding and adapting to this disease has been difficult but the worst thing is watching Nico lose his skills and movement. He’s now barely able to move and this is just heartbreaking. Thankfully he still has the most beautiful smile and we hope that he never loses this.

Favorite Activities
Nico loves being with people, listening to his dad singing, being looked after by his two little sisters Emma and Alejandra, and story time with mum. He loves the wind on his face and the feeling of being in the water. Walking our dog Molly and seeing family and friends

Favorite Foods
He’s got quite a sweet tooth, he loves chocolate yoghurt and custard!!

Favorite Television/Movie Character
Mickey Mouse and Paw Patrol

Favorite Books
Hairy Maclary from Donaldon’s Dairy

Parent’s Favorite Motto or Expression
Take things one day at a time

What They Would Like the World to Know About Their Experience Living with INAD
Nico is the most amazing, strong and happy boy. We just want to make sure he stays this way for as long as possible. We adapt to his needs each and every day and want him to have the best quality of life that this disease allows.

Special Fun Facts
We live in Madrid, Spain. Nico’s dad is from Spain and mum is from New Zealand. He has two younger sisters, Emma who’s nearly five and Alejandra who’s nearly two. They love making Nico laugh and giving him big cuddles. They also have a dog Molly who is always by Nico’s side. Nico is so lucky to have a big extended family who just adores him!

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