For the middle of the summer holidays Foyle View Special School is a surprisingly busy place.
It’s playing host to the Foyle Parents and Friends summer scheme, the fourth year the project has been held.
This year they are supporting the Bee for Battens campaign in honour of 11 year-old Derry girl Rhiannon Bates who suffers from the condition.
“Batten’s disease is a neurological disorder and the child is born with it,” explains her dad Alan.
“They are completely normal until they are three years-old and then they gradually start to take seizures, it affects their speech and balance and it gradually progresses.
“Rhiannon is now 11 and is permanently confined to a wheelchair, has almost no voluntary muscle movement and is totally blind.
“She is about as disabled as you can get.”
Foyle Parents and Friends was set up in 1963 and over the years has grown, providing support for parents of children with physical or learning disabilities.
The summer school was set up four years ago and has grown in popularity each year.
“Everybody within our organisation has somebody with a special need,” said organiser Mary O’Neill.
“We know what it is like during the summer, we know hard it is. I have a 22 year-old, Jackie, our treasurer, has a 35 year-old sister. We all have somebody with a disability. And during the summer we just know how hard it is for parents.”
The group approached Foyle View principal Michael Dobbins with the idea of the summer scheme and he gave it the green light.
The school runs its own scheme for the first two weeks of the summer holidays and the Foyle Parents and Friends’ scheme fills in the gap for the rest of what can be a long summer break for many parents.
“I see parents coming in with their child and maybe another one who doesn’t have a special need and we get them to leave them as well,” adds Mary.
“That way the mum can go away for the rest of the day and have a break to themselves and I know what that can mean to someone.
“It helps makes the parents lives that little bit better and the children themselves just love being here.
“We have cookery and crafts and other things like that on a regular basis and this week we took them to Pennyburn youth Club for a fun day with bouncy castles, cartoon characters, facepainters and balloon makers and that sort of thing.”
The scheme has grown in size every years it has been running and they now cater for between 45 and 50 children a day. It’s all staffed by volunteers.
“We have people who went to the scheme when they were younger coming back to us now as volunteers and doing a lot of hard work,” says Mary.
“We are putting them through the Millennium Volunteer award scheme which means they get certificates at the end of it all and that’s great for the ones going to university because they get credits.
“This year we are all wearing Bee for Battens tee-shirts to support Rhiannon and her mum Shona and dad Alan, who is now working with us.”
Alan says the summer scheme is ideal not just for the parents, but for the children who get so much out of it.
“For any child with a disability the most important thing is routine,” he explains.
“Most kids look forward to their summer holidays but for kids with autism, it is a nightmare.
“They are taken out of their routine, they are so distraught. Routine means so much and having that fixed routine helps keep them centred in their lives.
“When you have a child that is as severely disabled as Rhiannon, you have to give them a reason to want to go on living.
“Things like the summer scheme provides that and has done over the four years that she has been coming here.
“Before this in the summer she would just vegetate and become non-responsive and would sleep all day and all night and just shut down.
“It was so hard to keep her engaged to the extent that they can do here. Just listening to that buzz of noise and excitement, she’s listening to everything that is going on around her.”
Although Rhiannon is severely disabled and is not expected to live past the age of 12, she is in many ways just like any other little girl.
“She’s starting to get into those years when she can be a little bit of a brat when she wants to,” said her dad.
“She hates being washed and she can be a nightmare getting up in the morning.
“But her personality hasn’t changed – there’s still the same girl inside that can be cheeky when she wants to be.
“She communicates mainly though eye movement because she didn’t lose her sight until she was seven and so she still tracks noise just like anyone else.
“If she is interested in something it will be as though she can see you and if she doesn’t she will blank you.
“She chooses what she wants to participate in. Going to Pennyburn is great because she is quite happy to go to the bouncy castle and quite happily lie there with all the other kids playing around her.
“She’s not frail, she’s not going to break and we have never treated her like that. The more that is going on around her the happier she is.”
Batten’s disease is a fatal, inherited disorder of the nervous system that typically begins in childhood.
A spokesman for the National Institute of Neurological disorders explains: “Early symptoms of this disorder usually appear between the ages of four and 10 years, when parents or physicians may notice that a previously normal child has begun to develop vision problems or seizures.
“In some cases the early signs are subtle, taking the form of personality and behaviour changes, slow learning, clumsiness, or stumbling.
“Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten’s disease become blind, bedridden, and demented. Batten’s disease is often fatal by the late teens or twenties.
“Batten’s disease is named after the British paediatrician who first described it in 1903.
“It is also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of disorders called the neuronal ceroid lipofuscinoses, or NCLs.”
The Bee for Battens campaign was set up by Kerry couple Tony and Mary Heffernan after their daughter Saiorse and son Liam were diagnosed with the disease.
“They set it up to try and raise funds to send their own kids to America for clinical trials and to raise awareness of the disease.,” explains Alan.
“Saiorse went for assessment last November but they were told she is too far advanced.
“She was only five but her case was particularly aggressive and unfortunately she passed away in January this year.
“But in that short period of time they raised staggering amounts of money for the disease.
“They have since sent three other kids, including Liam who is three, to America for assessment. Two of them were refused but Liam has met the criteria and has had the procedure 12 weeks ago. “
For more information on the Bee for Battens campaign visit www.beeforbattens.org.