Grace’s Wish Valentine’s Ball

Charity Event at Hollins Hall, Baildon for Grace’s Wish

A charity event to always remember on 14th February 2014 we took our photo booth to Hollins Hall in Baildon, West Yorkshire

This event was to raise money for a lovely little girl called Grace

Grace will be 9 years old in February and has a life limiting condition called Niemann-Pick Type C (NP-C).

Grace’s Wish was set up to raise funds, so that Grace & her sister Emily can travel to Florida Disneyland & Swim with Dolphins at Discovery Cove.

Here is a YouTube clip showing highlights of that special night.

Ladies enjoying JC photobooth

Ladies enjoying our photo booth

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Below is an extract explaining more… from Grace’s website

Dreaming of a cure for Grace

Both our son Harry and daughter Grace were diagnosed with this rare genetic condition in 2008. We sadly, lost Harry to NPC in 2010 but we continue to fight to find a cure for Grace and other children who suffer from this condition, which affects around 50 people in this country and 1000 worldwide.

Sometimes referred to as Childhood Alzheimer’s, NPC causes neurological decline and loss of skills. The effects of this illness as a parent, is unbearable to watch. Grace is already having problems with eating and walking, she is hanging onto some vocal sounds and I dread the day when she can no longer call my name.

Hope is in sight, in the name of drug called Cyclodextrin. Trials have started in America, however, we are realistic, as it could still be years before approval is granted, if at all.

We take life with Grace and her twin sister Emily day by day, and try to make her life as happy as we can. Children with NPC have to live a lifetime in a childhood. Our next goal is to take her on a magical wish holiday to swim with dolphins in Florida and meet her Disney idols.

We will persevere to find a cure for NPC. Thank you for reading Grace’s story. Please share to raise awareness of Niemann Pick Type C.

If you would like to help support Grace’s Wish please contact us

If you’d like to make a donation, this can be done by BACS or online transfer to the Grace’s Wish account.

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Thanks for reading this post

Warmest regards,

James & Karen

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