Meet the courageous family battling against a super rare disease

When they were just four and two, happy, thriving siblings Ollie and Amelia were diagnosed with Batten disease.

Batten is a rare, incurable and fatal disease with a life expectancy of six to twelve years.

Ollie and Amelia’s parents are now dedicating their time to raising awareness of Batten disease and hoping to one day find a cure.

The family, from Poynton are now asking for the public’s help – and for them to join Ollie’s Army.

Ollie and Amelia

Batten disease, a cruel genetic disorder, robs children of their childhood and their lives.

Its victims cannot produce an enzyme needed to prevent the accumulation of waste in the brain.

This build-up leads to progressive loss of motor skills, seizures, blindness, and ultimately, complete dependency.

What is Batten disease?

For Ollie and Amelia’s parents their diagnosis was a devastating blow.

In February 2015, Ollie, then four years old, was diagnosed with Batten disease. Initially, his parents noticed delays in speech and clumsiness around his second birthday.

By September 2014, Ollie experienced his first seizure, followed by a diagnosis of generalised epilepsy and an abnormality detected in his cerebellum.

Despite these early signs, Ollie remained a happy and active child. The diagnosis of Batten disease came as a shock, one so rare that even the healthcare professionals had never encountered a case before.

Ollie’s parents were told that their son had only six to twelve years to live.

Amelia’s diagnosis

The family’s journey became even tougher when their youngest daughter, Amelia, was also diagnosed with Batten disease.

She was just two years old, a joyful child hitting all her developmental milestones.

The parents knew she had a 25% chance of having the disease but hoped against hope that she would be lucky.

The diagnosis was another crushing blow.

Taking the fight to Batten’s disease

The last few months have been indescribably hard for Ollie and Amelia’s family.

“Our life has been turned upside down and we feel a huge bomb has gone off,” their parents shared.

“This is the first time that we will be brave enough to share that we are struggling.”

The relentless stress of managing Amelia’s health, spending months in the hospital, and striving to maintain normalcy for their other children has been overwhelming.

Compounding their anxiety is the imminent decision from National Institute for Health and Care Excellence (NICE) on whether their children’s treatment will continue.

“Each day we wake up and our hearts ache… we know that one day our children will be taken from us.”

They explained the profound pain they endure, not just from the knowledge that their children will eventually succumb to Batten disease, but from the anticipation of the suffering that precedes it.

“We believe we feel a deeper pain than knowing that one day our children will no longer be with us on this earth… knowing that one day they will have to really suffer from the hands of this disease… seizures, pain, and uncontrollable movement disorders will become a part of everyday life.

“The slow deterioration in organs, being unable to absorb medications, nutrients, and surviving on fluids alone will become a reality.”

Currently, enzyme replacement infusions are the only treatment that keeps the most severe symptoms at bay.

“But it is not enough… this treatment is NOT a cure… it only slows down the progression of the disease. We NEED a cure!! Our children deserve a cure,” they added.

Ollie’s Army Ball

This October, the family is holding the annual Ollie’s Army Ball, a cherished event where the community comes together to support families like theirs.

They continued: “We love this event. We are blessed that so many people come together to support our belief in wanting to help other families just like ours.”

Funds raised from the ball support not only Ollie and Amelia but also the broader Batten community.

Over the years, Ollie’s Army has donated to numerous research projects and helped fund a Batten Nurse Specialist at Great Ormond Street Hospital.

They have also used donations to pay for legal action that overturned a negative decision by NICE, resulting in a managed access agreement that allows children diagnosed with CNL2 Batten Disease to receive life-prolonging treatment.

During the COVID-19 pandemic, Ollie’s Army launched a campaign to save Amelia’s sight, raising over £200,000 for Great Ormond Street Hospital.

“The hope from this program is that the eyesight of children with CNL2 Batten Disease can be saved.

“This program is still ongoing and is showing very positive signs,” they shared proudly.

Despite their achievements, the family knows that more needs to be done.

“We need auction and raffle prizes for our ball in October. Please, if you can donate a prize in any way, big or small, contact us directly,” they appeal.

If you would like to attend the ball, then please email Emma at [email protected].

The parents’ heartfelt message is a call to action for the community to join them in their fight. “We are so proud of what Ollie’s Army has been able to achieve, but we need to do more, and in order to do this, we need your help.”

You can donate to this cause via JustGiving by clicking here

You can find out more about Ollie’s Army here