Finding Kahn Taylor help for Wolframs Syndrome in the USA

$4,128 donated

Given by 59 generous donors in around 8 months

There's a clinic in USA that helps research Wolframs Syndrome - I want to send Kahn there to see what help we can find him.

Hawke's Bay

Kahn Taylor is my eight year old nephew.

Unfortunately Kahn has a VERY rare genetic disorder called Wolfram Syndrome.

People who are affected by the syndrome USUALLY contract it from around the age of 6.

Optic nerve damage and blindness occurs around age 11.

He will also become deaf and this has varied between ages in the past so this is unsure what age.

60-90 percent of patients have urinary tract issues which will present in a very weak and impatient bladder.

Many individuals who have had this syndrome have ended up with mental illnesses, many attempted suicides and anger issues.

Diabetes is a huge part of Wolframs Syndrome and Kahn has had this since he was very young.

There is a clinic at the Washington University in St. Illinois that is dedicated to research and diagnosis of Wolframs Syndrome. I have put Kahn's name forward to be selected for trials and to see if there's anything we can do to slow the process or stop it if at all possible.

The Give A Little Page is so we can get Kahn to this clinic in USA and see what chance we have to watch this little boys blossom to the best of it's ability.

While in the states, we want to take him to Disneyland while he can still see, hear and enjoy the rides and a bit of travel.

Help me, to help him find what possibilities we may have to extend his vital senses!

Much love and thank you for visiting and donating :) x

Shannon Porter's involvement (page creator)

I am Kahn's auntie, Shannon Porter. I was there when he was born and he's the first child of my sisters.

He's such a beautiful boy and always sees the best in everything ironically. He always wants to play and be involved and learn.

It breaks my heart to know that he won't be able to see the world during his adult life and that his adult life in general will be cut short as some people with Wolframs Syndrome can pass away as soon as 30yo.

I just want to help in any way I can and to show him as much as I can before that time comes!