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Wolfram Syndrome NZ

$189 donated

Given by 7 generous donors in one year

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We are raising funds to help pay for medical fees, diabetes treatment and help for my nephew with Wolfram Syndrome

Hawke's Bay

We have raised funds before for Kahn Taylor, to take him to the only clinic in the world that helps research Wolfram Syndrome, which we achieved! THANK YOU TO EVERYONE WHO DONATED!

As my sister is a single mother, we are looking for help with medical fees, diabetes treatments and to put money forward to research this syndrome further. And eventually help fund the FIRST Wolfram Syndrome unit/clinic in New Zealand. I am currently trying work closely with NZORD and to see what we can do to help children with Rare Genetic Disorders.

Please help us to help them!

Shannon Porter's involvement (page creator)

I am Kahn's Auntie and was there the day he was born. Kahn means so much to me and my heart hurts thinking about what he has and what he will endure.

Last August I participated in my first Half Marathon to help raise money to get Kahn to USA to visit the specialised doctor who researches Wolfram Syndrome! Which we achieved and was so heart warming to go there with Kahn and my sister (Kahn's mother).

Currently I am working in fitness and my ambitions are to help those who suffer mental illness or genetic disorders.

This is very close to my heart.

Use of funds

Funds will be used to help pay for Kahn's medical fees, diabetes treatment, research into his very rare syndrome and to help others who suffer the same.

We plan to hopefully have a clinic within New Zealand before Kahn's functions deteriorate too much and help prevent as much damage as we can.