In 2014, we launched Battle Batten, our campaign to raise funds for research into the cruel CLN5 Batten Disease devastating our twin boys, Freddie and Louie’s lives.
Our story, told through video to the start of the campaign, sprang many into action. Our story is still painful, and the boys lives are more difficult now than in 2014 – they do suffer from a life-limiting degenerative disease.
However, during the campaign, we have found the most amazing courage and hope thanks to the humanity and kindness of people who have helped us fundraise way in excess of the £20,000 we ever thought we could achieve.
With a total standing at £100,000 in September 2017, just 2.5 years after we launched, we are the first UK family to privately fund research into CLN5 Batten Disease. You can catch up on our campaign.
Our story begins here, and it continues until therapies and drugs are found that help all children worldwide with CLN5 and other forms of the cruel Batten Disease.
Imagine the elation of finding out you’re having twins, believing your own battle with Leukaemia had made it impossible.
Imagine the surprise, the excitement, the joy.
Imagine three years later your healthy babies are blind, autistic…and told they will die. Before you…
Our twin boys, Freddie and Louie, were born healthy 2005. Life was perfect if not a little daunting. We started planning our future like everyone else with holidays and playing in the park; we loved watching our children develop and grow. Little did we know what was around the corner…
The first twinge of concern registered when the boys were slow to walk; this grew to further trepidation when approaching two and the boys had only a few words to say.
Diagnosed by the doctor as having Autism, we read up on the condition and prepared ourselves as best we could to help our children cope with the condition and live a full life.
Nature then dealt us a new blow.
“The boys’ eyes began to flicker and they started tripping over things. We noticed that Freddie in particular would sit very close to the television.”
We were referred to Great Ormond Street Hospital and several blood tests later, the boys were further diagnosed – with Batten Disease. A fatal, inherited disorder of the nervous system.
In simple terms this meant our boys’ health would continue to deteriorate over their short life-time. They will never get better and that is a really hard thing to come to terms with. It was traumatic watching two young, frightened toddlers coping with autism and then going blind. Watching them sit and bang their heads on the floor in frustration for nearly a year was the worst thing ever.
Completely blind by the time the boys were three, and now with unsteady legs, we endured test after test at Queens Medical Centre in Nottingham. Doctors already suspected a neurological condition.
“I remember driving to QMC for the diagnosis and Sarah saying to me ‘this day will change the rest of our lives’. Those words still live with us today. Nothing could have been more true.”
We learned that Freddie and Louie had Batten disease, a common name for a group of inherited, neurological diseases that are currently fatal. We were referred to Great Ormond Street Hospital and several blood tests later, the boys were further diagnosed – with the rarest form of Batten disease, late infantile variant CLN5.
Freddie and Louie are the only known identical twins in the world that suffer from CLN5 Batten Disease.
“In simple terms, we were told the boys’ health would continue to deteriorate, with epilepsy and cognitive and motor disabilities. The doctors know little about CLN5 but predicted that Freddie and Louie will die before the age of 14. Our hearts broke in a million pieces.”
In 2009, doctors said that unless major advancements in medical science were made, there was no hope, no treatment and no cure. In 2014, those advancements had been made meaning doctors knew more about CLN5 and needed £20,000 to complete the next stage of research to find a treatment.That’s when we launched Battle Batten.
Now ten years old, the boys have been through a difficult, emotionally loaded time full of experiences no young child should have to cope with. The exceptional challenges of walking and talking; the loss of their sight; sleeplessness; epilepsy and the continuing deterioration of their quality of life.
Despite having great careers in nursing and retail, we can no longer work.
“It all sounds sad but there are moments of joy that will create a lifetime of memories for us. The most significant was when Freddie smiled for the first time in three years! We found hope. We now fight to live life. We take great joy in the little things – like swimming or listening to music from Olly Murs to the Beastie Boys and even classical music. The music performed by violinist Daniel Hope, that we have used in the video telling our story, evokes enormous delight and passion in Freddie and Louie.
“We cannot thank Daniel, Ludovico Einaudi and Warner Chappell enough for granting us permission to use “I Giorni” – it holds a very special place in our hearts.”
Our challenge now is to keep the fundraising alive so that at the end of the current research projects, there is money to continue. In the meantime, we have enough money to buy equipment like wheelchairs to help Freddie and Louie and other CLN5 sufferers.
Want to help us Battle Batten? Then please click on our ‘supporting us’ page and help us raise money by giving what you can.