The story of Mel
Matthews Journey with Late Infantile Battens Disease
Im going to tell you a little about my journey and Battens disease.
A little about my darling Matthew and my family.
Matthew is our second child, Tom being the older brother who is 13,
I guess we would always describe ourselves as a “normal” happy go lucky family, very much part of our local community.
Matthew was born a perfectly healthy – nearly whopping 10 lbs, our family was complete. Matthew thrived as normal toddlers do up to when he was just 3. He was a typical 2nd child…… I had my hands well and truly full! A character, a blessing and a bundle of complete and utter trouble!
It was February 2005 …..whilst driving home from an afternoon with friends & their children, Matthew turned blue in the back of my
car……. Panic stricken we dialled 999…….. After being blue lighted to hospital little did i know this was the beginning of a
roller coaster ride of hospitals, tests & exhaustion for myself & Chris.
After several similar episodes & me constantly nagging Doctors to listen to me Matthew was diagnosed with Epilepsy…….. Its ok I
thought I can deal with that……….
It then over time became apparent that things were desperately wrong and a battle was ahead of us to find out what exactly was wrong with our little blue eyed boy.
From being our cheeky monkey pinching my brand news clarins lipstick and smothering himself with it head to to, being a number 1 fan of Thomas the Tank Engine and his passion for Peppa Pig, Dora & Fifi & the Flowertots, Matthew started to show signs of loosing all his
skills he once gained. Matthew could once run…… Oh my he could run like the wind, He could talk, Count to ten, attended preschool and
charmed everybody with his infectious smile. These milestones were slowly slipping away from us. What was going on?
After hundreds of hospital appointments and I mean hundreds, from Cheltenham General Hospital to The John Radcliffe then to Great Ormond Street Hospital (thats where you know something is severely wrong, being airlifted by the air ambulance twice, dialing 999 weekly sometimes daily and mad dashes to the nearest A&E department, countless blood tests, brain scans, lumbar punctures, & EEG’s we eventually got our diagnosis we had been fighting to get to the bottom of. Being an on the ball kind of Mummy I had done my research and there was 2 words I didn’t ever want to hear. BATTENS DISEASE!
Tom got used to Mummy being in hospital and doing the things he loved with just Daddy ……. It became our Norm…..
In October 2007 just before Matthews 5th Birthday we received the devastating news that our little man had the terminal Brain Condition,
Late Infantile Battens Disease……. Our world was turned upside down, we were completely devastated. (Late Infantile Battens Disease
begins between ages 2 and 4. The typical early signs are loss of muscle coordination (ataxia) and seizures along with progressive
mental deterioration, though afflicted children may show mild-severe delays in speech development well before other symptoms appear. This form progresses rapidly and ends in death between ages 8 and 12. – it is often described as the Childhood form on Motor nuerone Disease/Alzheimer’s )
How do you deal with this? How are you supposed to come to terms with the fact that your child is one of between 4 to 6 children in the country being diagnosed with this……. Your child is going to die……. ….this isnt happening……. but It was happening to us.
Matthew was a normal child. We are a family of 4 and now its being torn apart by genetics!
Matthews health took a dramatic turn for the worse on his 7th birthday. We cancelled his party and in a whirlwind we found ourselves
watching over Matthew on life support at Bristol Childrens Hospital.
Acorns childrens Hospice were firmly at our side with our wonderful community Nurse supporting us through this horrendous time, if I needed someone to hold my hand……. This was a very alien experience to me and I wasnt coping well on the inside….. in good Old Mel
fashion I coped & seemed to be doing remarkably well on the outside …….. I fooled many even my Mum but she knew what really was
going on & made us feel like we were the only people that mattered in the world at a time – we were sleep deprived, confused and absolutely exhausted.
After 10 days on life support we knew that Matthews short little life had ended and we had to let him go.
Its been 4 years since Matthew passed away but it feels like only yesterday. A cure is still to be found.
“Life is not measured by the number of breaths we take but by the moments that take our breath away……..”
For more information on Late Infantile Battens Disease:
http://www.bdfa-uk.org.uk/late-infantile-batten-disease