BDFA Trustee Bob shares his family story about his son Frank

Heart-breaking news

In October 2012 a Neurologist gave us the worst imaginable news.

The youngest of our three children, Frank, was diagnosed with Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition.

Reaching every milestone

Frank had been a healthy boy developing as expected. Energetic, fun and joyful, he was a child who loved to run and play with his brother, sister and friends.

But things started to change

Frank was 3 and a half when the violent shaking of his first terrifying seizure woke us up. Over time Frank’s seizures increased and trips to hospital became common.

Frank’s seizures got worse

Less than a year later it became clear something was very wrong. Frank started to regress mentally and struggled to communicate.  He became unable to perform everyday activities, was now unsteady on his feet, unable to feed himself and could no longer play with his toys.

A succession of seizures saw Frank rushed to Accident and Emergency. His medication was not working, and Frank spent a week in hospital undergoing tests. 

Frank would have a short life

Frank was just four years old when we had to come to terms with the most heart-breaking news. 

Nothing can prepare you for the news that your child is terminally ill. 

Nothing can prepare you for the pain of watching your child struggling with the loss of their mobility, their speech and their sight. 

Nothing can prepare you for telling your other children that their little brother will only live to be between, at worse, 6 and, at best, 12 years old.

Taking its toll

By the age of 9 Frank was blind, unable to move, fed through a tube and needed assistance with breathing. He experienced distressing seizures hourly and suffered from dementia. Frank required extensive medications and 24-hour care. 

The physical and emotional demands on our family were unrelenting and every day you mourn the child you are losing and the childhood he has lost.

Missing the Frank we had known

We no longer saw him heartily tucking into a plate of food.

We no longer heard his joyful voice, his cheeky smile, his laughter and his affectionate kisses. 

I miss him jumping up, excitedly throwing his arms around me and calling me “Mummy”. 

We desperately wanted to make the most of every moment with him, doing things that he could enjoy.

And now he is no longer with us

In October 2021, aged just 13, Frank died – now we have only his memory. 

Grief is our constant companion. 

Making the most of our time together

Our family was shattered by Frank’s devastating diagnosis. 

Thankfully The Batten Disease Family Association was part of a network of support that enabled us to cope and to give Frank, his brother and his sister the best life possible.  It has also been there for us after his death.  

That is why I am now a Trustee of the BDFA.

Batten Disease effects more than 120 families in the UK

Our story is not unique. 

These children have something in common – their lives will be cut short. 

No family should face this journey alone, no family should feel isolated or have to fight to get the support they need.