Butterfly kisses for teen Rhiannon

Rhiannon's family celebrate her prom on Saturday (pic by Peter Kane)
Rhiannon's family celebrate her prom on Saturday (pic by Peter Kane)

It was the birthday event that mum and dad Shauna and Alan Bates were told they might never see.

When their daughter Rhiannon celebrated her 13th birthday with a special prom on Saturday - she defied medical experts who told the family she would never see her seventh birthday.

Rhiannon suffers from Late Infantile Batten Disease, a rare neuro degenerative condition that affects only a handful of children in Ireland.

She is now the oldest child in Europe living with the condition and her determination continues to astound her family.

“My wean is now a teenager, I can’t believe it,” said Shauna. “We decided that because it was her 13th birthday we wanted to do something special so we thought of a prom.

“There was an enormous amount of preparation to do, honestly organising my wedding wasn’t as hard.

“We had to get Rhiannon her dress and make sure her hair was perfect. Everyone at the prom got involved wearing their formal dresses. Rhiannon even had a date and why shouldn’t she?

“She had an absolute ball and I haven’t seen Rhiannon as animated in years.”

There wasn’t a dry eye in the house when dad, Alan took Rhiannon to the floor for a dance with their special song ‘Butterfly Kisses.’

“There were tears shed and it was quite emotional,” said Shauna. “It was a great day and we have memories from the prom that will last us a lifetime.”

Shauna revealed how Rhiannon was diagnosed with Late Infantile Batten’s Disease at the age of six and a half.

“Rhiannon had a late diagnosis,” she said. “Normally children are diagnosed at four. Now she’s the oldest child in Europe with the condition.”

Shauna and Alan have fought a long campaign to raise awareness of the condition through the ‘Bee for Battens’ charity and they sit on the board of trustees with founders Tony and Mary Heffernan.

The Heffernan’s daughter Saoirse passed away from the condition in 2011 and their son Liam who is 5 has been diagnosed with Late Infantile Batten’s Disease.

Currently the charity is trying to raise money for Liam’s Lodge, a respite facility.

Shauna insists that Rhiannon is the most determined child you could ever meet.

“She can be your everyday, temperamental, hormonal teenager and argues with us,” she said. “She may not be able to talk but she can voice her opinion.

“But she also sends us her love all the way up to the sky and right back down again by rolling her eyes up and down, we love that.

“When Rhiannon was diagnosed a long time I promised myself that while she may have a disability, I wouldn’t let the disability have her. She does everything other kids her age do.

“She has travelled all around the world and in three weeks will be driving to Belgium with us.

“Music is Rhiannon’s world, she loves everything from the classics to Metallica. You can see her response to music and her world is a brighter place with music in it.”

The Bates family never stop planning for the future.

“We always look forward,” said Shauna. “We were deciding the other day what we are doing for our holidays next year. We are always proactive making sure life doesn’t get boring for Rhiannon.

“She is doing well, she has her ups and downs and has given us a few scares this year. She loves school at Foyleview and it is great to her. Our Rhiannon is unstoppable.”