Ollie's story
On the 13th February 2015 we found out that our third son, Ollie, has Batten Disease. There is no cure, life expectancy is between six and twelve years. Ollie was just four years old. Now, every day that we spend as a family is a gift. We will never take this for granted.
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Ollie, or Olliebobs as we like to call him, was born in January 2011. He’s a normal, happy and lovable boy that at just the age of 4 was diagnosed with Batten disease.
Children with Batten disease cannot make an enzyme responsible for eliminating waste that builds up in the brain. Over time, affected children suffer worsening seizures and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, tube fed, fully dependent on others for all their needs, and unable to communicate.
Ollie is still our smiling, beautiful boy. For us as a family, the most important thing is making every moment count.
Our time is dedicated to spending as much quality time with all of our children whilst raising as much awareness of CNL2 Batten disease as possible.
Ollie's diagnosis
We didn’t notice Ollie’s speech delay and clumsiness until his second birthday. Then, on the 9th September 2014, Ollie had his first seizure.
From then on, Ollie began having weekly seizures. In October, an EEG confirmed generalised epilepsy. An MRI scan showed a small abnormality in the cerebellum.
All the while, Ollie was his happy, active self — running, talking in sentences. We were repeatedly reassured that it was nothing to worry about.
Then, on 13th February 2015 we were told our four year old boy has a fatal disease. One so rare they had never come across a child with it before.
Ollie’s treatment
Currently there is no cure for Batten disease — it is always fatal.
We fought for compassionate use of a drug that shows positive signs of slowing down Batten disease. Now, Ollie and his sister Amelia are receiving ground-breaking treatment at Great Ormond Street Hospital that’s keeping our children stable and slowing down their deterioration. In September 2019, we had a long battle with NHS England and The National Institute for Health and Care Excellence (NICE). After personally taking legal action, this treatment was made available on the NHS for all children diagnosed with Batten disease, under a five year managed access agreement.
Ollie’s wishlist
This is a list of things Ollie would love to enjoy while he still can.
Football stadium
Ollie used to love playing football, before he lost his ability to walk. Now, he loves to watch football on TV instead. To visit a stadium would be a magical experience for him.
Swimming with Dolphins
Ollie loves the feel of water, as Ollie can no longer walk or stand we use water as a type of therapy. We would love for Ollie to be able to experience swimming with Dolphins.
Lapland UK
It would be magical to go to Lapland to create special memories but Ollie can no longer regulate his body temperature so it would be far too cold. Now there is a Lapland UK which we’d love to take him to.
Need for speed
Ollie loves anything to do with motorbikes and fast cars, so we'd absolutely love to be able to give him a high-speed motor experience.
Up in the air
Before Ollie lost his speech, he asked to go for a flight in a helicopter or plane, so it would be lovely for him to have this experience.
Disney World Florida
Ollie has a huge love for rides, we know that Disney World Florida can offer Ollie these types of experiences even now Ollie is in a wheelchair.
We’re determined to give Ollie and Amelia as many magical experiences as we possibly can. Ollie and Amelia’s dad is self-employed so we’d love to raise enough money to allow him to share these precious experiences with the family.
