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Ollie’s Army needs your help
Ollie and Amelia are 8 and 6 years of age and have been diagnosed
with CLN 2 Battens disease.
The disease Robs all children of their abilities and eventually they will die. Ollie is now wheelchair bound and can no longer walk, talk, see or eat. He is now tube fed. Their parents couldn’t sit back and not fight for a treatment or a cure. Biomarin have created a drug that slows down the progression of the disease and their parents fought and managed to get Ollie and Amelia access to the drug through compassionate use. Because of this Amelia is like any other 6-year-old. She loves to dance, run, play with her babies and play football like her older brothers. Every two weeks the family travel to Great Ormond Street hospital so that Ollie and Amelia can receive the drug via Brain infusion. This drug has slowed down the progression of the disease in both children and has given them a better quality of life. NHS England And NICE will not fund this drug. Ollie’s Army are now fighting this, and we need all the funds we can get to pay for the costly legal fees.
On 19th May the closest children to Ollie and Amelia will take part in the Simplyhealth junior run in Manchester. Amelia herself is taking part along with Danny and Micky their older brothers and their cousin Havana-Rose.
Amelia, Havana-Rose, Jasmine and Austin are all running the mini run which is 1.5KM. They are running this for Ollie and Amelia. This is a huge accomplishment for Amelia as she should be now losing her abilities but instead,she is learning new things all the time and is taking on the challenge to prove that the drug is working and is worth the money that our NHS will not pay.
Danny, Micky and Lucas all decided between them that they wanted to run the 2.5KM race for Ollie and Amelia. These boys are 12,10 and 11 years of age. They have seen what this disease has done to Ollie and want to fight with Ollie’s Army. They see the daily battles that the children face and don’t want to lose their siblings and Friends. These boys are still children but understand how important this is and how they need to do something to help the fight.
All monies raised will be used by the family to fight the legal battle and get what the children deserve and need to stay alive.
Please Donate anything you can and help support our children for wanting to help their siblings, cousins and best friends.
PLEASE MENTION OLLIE'S ARMY WITH YOUR DONATION SO THE MONEY IS RECEIVED BY OLLIE'S ARMY