£2,337

raised of £1,500,000 target
111
supporters
0% 2 days left
Flexible funding – this project will receive all pledges made by August 28th 2019 at 9:37pm

We need funds to get treatment for Grace as it’s still not available on the NHS. Please give Grace chance to live a life.

by Izabela Swierczynska in Chesterfield, England, United Kingdom

Grace is 4 years old. She is bright little girl full of life. She loves singing most of all. She loves her dog. She keeps asking when she can go school. She loves blueberries and chocolate. She wants to live!!!

4th of July had different meaning for us. Grace has been diagnosed with Batten disease. We were told she will live only to her teens and that there is no cure. Our world has turned upside down. 

BATTEN DISEASE takes from children ability to talk, walk, eat on their own, it gives them dementia, it makes them blind , deaf, takes ability to breath  and at the end of all this cruelty kills them by age of 10.  

But she is with us. She’s happy. And there IS treatment! Enzyme replacement therapy - BRINEURA. It DOES WORK. IT STOPS and delays symptoms until they find cure. It’s not available on NHS as they decided it’s not good value for money!!! How can you put value on child’s life??? We desperately need this treatment before it’s too late for Grace. 

Please help Grace to be able to live her life. To be as happy as she can be. Help us raise enough money and start treatment immediately before NICE and NHS take their time to approve it  

It cost £500,000 but doctors won't give Grace treatment unless we can proof we've got more than just one year worth of money in the bank. NICE should approve Brineura hopefully this year. But Grace hasn't got a year, months, weeks. She needs this treatment NOW!!! I'm begging for help.

Every pound counts. You can donate by PayPal too: PayPal.me/FightForRGrace

Let's make 'Fight For R Grace' happen

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