Awareness of 'cruel disease' vital to get correct care sooner, says mum of North Kessock boy affected by Batten disease
Register for free to read more of the latest local news. It's easy and will only take a moment.
by Donna Mitchell, whose son Reece (9), was diagnosed with Batten disease aged five.
International Batten Awareness Day is a day to raise as much awareness of a cruel disease that is very rare – many people have never heard of it and that goes for in the medical profession too.
On this day, we ask people to wear orange, decorate outside their houses with orange bunting, balloons and other items and tell people about this disease.
My son Reece who is nine – and will be 10 in July –was diagnosed at five. There are 13 known types of Batten disease and he was diagnosed with the CLN2 variant.
Children are born seemingly healthy. In Reece’s case, he had speech delays and behaviour issues. Then, when he was three, the seizures started.
Nothing can prepare you for watching your child take their last steps or say their last words.
At first, he was diagnosed with autism and epilepsy, and it wasn’t until his seizures were getting worse and undergoing further tests were correctly diagnosed with Batten disease.
By then Reece was already starting to go blind, which was awful to find out. It explained some of Reece’s behaviours as he was unable to tell us that he couldn’t see.
Battens disease robs children of all their acquired skills until it takes their lives. Reece’s life expectancy is 12.
Since his diagnosis, Reece has lost the ability to walk, talk, and eat. He is blind, has movement disorders and other issues.
Even though you are told this will happen, nothing can prepare you for watching your child take their last steps or say their last words, or even the last time that they are able to enjoy a meal.
Reece now is completely dependent on me for all his care needs.
I don’t really see myself as a carer – first and foremost, I’m his mum. It is 24/7, but that’s how I chose to do it. While I am able to do it all by myself, I’m also aware that as time goes on I might need help, but this time with Reece is so very precious and special.
- Inverness mum facing the death of her wee boy praises CHAS charity's home support lifeline service
- First Minister hails brave North Kessock lad and says she will be marking Batten Awareness Day
Often, we have to explain to people what Battens is as it’s that rare. Awareness is so very important so that in future children receive quicker diagnosis, parents and families are supported better. And that children can access the correct care sooner.
This year the support for awareness day is amazing, and we hope on the day we see lots of orange on social media.
Thanks to my friends Eilidh and Paul, we have Lifescan going orange for the day, and Reece’s face will be on their plasma screens. Ness Bridge will glow orange on the night, Duncan Forbes primary school are inviting children to wear orange and I’m hopeful that we will see some orange in North Kessock were we live, the local cafe The White Cottage have put up a poster and we off course will have our orange tops on and will have orange ballon’s and bunting in the garden as well.
Our Battens children endure so much in their short lives, and they do it with such strength and courage that this day is for them but also to remember all the beautiful children who sadly are no longer with us, they shall not be forgotten.
Our children desperately need a cure.
Batten Disease Family Association (BDFA) is the charity supporting children affected by Batten disease and their families. To know more about their work or to make a donation, you can visit www.bdfa-uk.org.uk.
