Toby’s dream

$37,695 raised

TARGET $50,000

Please support this cause

$
AUD

About

On March 21st our worlds were turned upside down and we were given a diagnosis of Juvenile Huntington's Disease ,JHD for our 16 yr old son Toby

About two years ago we started to notice some changes with Toby , his balance , motor skills , his speech and some swallowing problems
This led to discussions with our family and with school , which in turn led us to a paediatrician
The following day we were at the hospital having MRI scans and assessments and the following week we were at Sydney Children's Hospital to see DR Michelle Farrar , neurologist and DR David Mowat , genetics , for more tests and assessments
During the next ten months we had no answers ,he had puzzled everyone and it was a matter of elimination , during this time Toby's symptoms had become worse
We were back at SCH in February 2022 for a review and further assessments / lumbar puncture and more blood tests and review with the allied health team
In March this year our paediatrician referred us on the the adult world and now have a local team of drs and allied health helping us during this trying time

If you develop symptoms of Huntington's and are diagnosed with the disease before the age of 20, this is known as Juvenile Huntington's disease - sometimes called JHD or Juvenile-onset Huntington's. Juvenile Huntington's is quite rare. Less than 10% of people with the disease will have Juvenile-onset.

This is a degenerative disease with no cure !
Our focus now is to manage Toby's symptoms and keep him safe

Toby is a wonderful kid , he's smart , funny and loves to sing and loves music
He loves his family ( even if he says he doesn't !! ) and his dog
He loves D & D and Anime and building Lego and he is a happy kid and we will follow his lead
We are looking forward to spending as much time with Toby and creating some wonderful memories with our beautiful boy , we love him dearly
One thing that he wants to do is go to Disneyland and Universal Studios and so that is what we are going to do !

This cause will allow us to do the extra things, take a day off to spend with him , a family weekend away and create memories for everyone
It will also allow us to manage Toby’s needs whatever they may be
A wheelchair or new bed or even just some Lego

This , as a family, is the hardest thing we will ever have to do and asking for help is a tough thing to do

We thank everyone from the bottom of our hearts for any donation and look forward to sharing our memories with you all

Please share with all your family and friends ❤️❤️❤️

Fundraising For

Toby Holt

Funds Banked To

SK & LM Holt


Campaign Creator

Ali Pitts

Wagga Wagga, NSW



Fri, 30 Sep 2022

Tracey Herbert

$ 250
Tue, 20 Sep 2022

Anonymous

$ 28
Sat, 17 Sep 2022

paul bush

$ 250

all the best Holty

Sat, 17 Sep 2022

Kelly Shaw

$ 50

God Bless

Tue, 13 Sep 2022

The Irvine’s

$ 100

Sending our love ❤️

Tue, 13 Sep 2022

Samantha Shephard

$ 40

Have the best time in America Toby - From Year 12 WWHS

Mon, 12 Sep 2022

Kelly & Tim Hunt, Julie & Ken Gray

$ 350
Mon, 12 Sep 2022

Jenny Houghton

$ 500
Mon, 12 Sep 2022

Ian Geltch

$ 200

Go Get em !!

Sat, 10 Sep 2022

Tony & Sam Stratton

$ 200

SINCE Jun 2022

276 

Donations

$37,695 raised

TARGET $50,000

Please support this cause

$
AUD

Fundraising For

Toby Holt

Funds Banked To

SK & LM Holt

Campaign Creator

Ali Pitts

Wagga Wagga, NSW

SINCE Jun 2022

276 

Donations