THANKYOU

As you all know from facebook (Battens Disease - Matthew Hall) we have had an amazing number of members showing incredible love and support to Matthew & my family. How humbled we are with you all.

A number of people have emailed me to ask where they can donate so here we are today.

Matthew is the most incredible child, up to the age of 3 was a perfectly normal child, a happy little chappy, thriving and reaching all milestones. Boy has our world changed since.

From 3yrs & 3 months he started to have seizures, this carried on with reasonable control thanks to medication until aged 4 1/2  where investigations began as he started to regress in skills etc.

At the tender age of 4yrs 11 months we were delivered the very tragic news that our precious, beautiful little child had the exceptionally rare and terminal condition "Late Infantile Battens Disease"

Ok this is where i will get emotional typing. The prognosis isnt good, Matthew is now within age range of death (5 - 12) hes nearly 6 - but at present remains well.

Matthew now cannot walk, talk and is visually impaired, pretty much blind. But hes a happy little sole and adored by all.

We are part of a very important study from London's, Great Ormond Street  & Evelina Hospital who's fabulous neurologist Ruth visits us at home every 6 months to study Matthew and how the disease is progressing.

This is where you can help.......... Battens Disease is so rare, I cant tell you how rare...... Matthew is they think one of 8 in the uk. Not much funding goes into research and i feel its my duty as his mummy to help the researchers find the cure so no other family goes through what our little boy is.

Matthew lights up any room with his infectious smile, his laughter, his love for Peppa Pig & Dora.

Im not asking you to dig deep, just support the BDFA if you can (remember gift aid so more goes into the pot) any small amount would be welcomed.

Spread the word by inviting friends to his page if you can.

Most of all, from the very bottom of my heart thank YOU for showing support to a very special little boy, who knows through facebook maybe the little face before you can make the difference.

Give your kiddies a kiss and an extra cuddle from me

Thankyou so much

Mel xxxx

(Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Batten Disease Family Association gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.)