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