Rhiannon is our miracle girl
When little Rhiannon Bates was diagnosed with an extremely rare medical condition, her parents feared the worst.
But with the love and devotion of her family, the plucky Derry girl has defied the odds and recently celebrated her 10th birthday.
Derry Journal reporter Erin Hutcheon spoke to the remarkable couple this week about their beloved daughter who's a big fan of Miley Cyrus and is a VIP of the Ulster Orchestra, not to mention her love for baking and her adorable support dog Charlie!
Rhiannon Bates gently rolls her eyes to the ceiling and back to the floor - it's a message for her mum Shauna and dad Alan.
"I love you all the way up to the sky and right back down again," she tells them.
Rhiannon, who has an atypical form of Late Infantile Batten's Disease is confined to a wheelchair, has lost her sight and much of her speech.
Her parents Shauna and Alan treasure every moment with their daughter and at their wedding two years ago exchanged rings with Rhiannon to symbolise just how big a part of their life she is.
Medics said Rhiannon would never see seven, but she recently turned ten. The family don't know how long they have left with her and make the most of every day together.
"Shauna and I are conscious that soon all we will have are our memories," explained dad Alan. "We decided to send all our home movies, pictures and films away to be put on DVD. I can't watch them yet."
However mum Shauna says watching home footage of Rhiannon as a toddler running around like any other little girl is soothing.
"It's never easy to look back but watching Rhiannon I know that she is the same child she always was, the personality is still there," she said.
Rhiannon is one of only three children in Ireland who suffers from Late Infantile Batten's Disease.
Along with Irish couple Tony and Mary Heffernan whose two children were recently diagnosed with the disease, Shauna and Alan recently formed the charity 'Bee for Battens' to raise money to research the condition.
'Queen Bee'
The name for the charity came from the Heffernan's daughter Saoirse, who they call 'Queen Bee.'
And while Shauna and Alan believe that a cure for Batten's Disease could be found soon, they know it will probably come too late for their daughter.
"Trying to find a cure is bittersweet for us," explained Shauna. "While we know it won't be there for Rhiannon, there will be hope for other children. We never despair, we just get on with things.
"We've taken Rhiannon to Lourdes, but it wasn't hoping for a miracle. Our miracle is that Rhiannon is still here, our miracle is that she made it to double figures."
On June 16 2000, a day Shauna and Alan describe as the happiest in their lives, they welcomed their beautiful daughter Rhiannon into the world. For the first few years she was a normal happy child.
But suddenly Rhiannon started experiencing seizures. As time went on she began to forget basic things like shapes and colours and couldn't sing the alphabet song anymore.
Shauna explained: "Rhiannon had her first seizure when she was three and a half but her condition wasn't diagnosed until she was six and a half. We had no clue that she had been born with Batten's. If anything I'd say that before this Rhiannon was very advanced as a child."
As Rhiannon's condition advanced, medics warned Alan and Shauna that their daughter would probably not live past seven. Alan immediate handed his notice in to care for Rhiannon full time.
"My daughter needed me more," he explained.
Despite all the odds, Rhiannon has defied the medical world and continues to live as normal a life as possible.
At one stage Shauna and Alan hoped she could benefit from stem cell therapy, however were told she was too well for the first phase of the therapy. Now researchers have reached the second stage they've been told she is too ill.
Shauna explained: "Rhiannon's lost her speech, sight and mobility, but it hasn't lost her, she can still be cheeky and understand us. You need to know Rhiannon very well to communicate with her, but her personality shines through her eyes. If you tell her she has pretty eyes she will bat her eye lids, if you fall out with her she will give you a dirty look. She can still vocalise but only when she wants to."
Alan revealed how he still likes to do all the fun things that Rhiannon enjoyed as a toddler.
"Rhiannon loves baking," he said. "When we're in the kitchen she's in there helping me, she loves holding the electric whisk and the vibrations it makes. It's the same with the X-Box, she loves playing, especially when the controller vibrates.
"She loves Miley Cyrus, is a VIP of the Ulster Orchestra and loves classical music. Rhiannon loves being the centre of attention. When she goes out into the street the wanes all play around her."
Shauna explained how Rhiannon has her own support dog Charlie who loves to sit at her knees.
"Charlie has been a real comfort to her," she said. "We've never mollycoddled her, she is a little girl with a lot to live for.
"She attends Foyle View school three days a week which she loves, it keeps her interested and socialised."
In February 2008, after Rhiannon had been admitted to intensive care, Shauna and Alan decided to get married.
"We'd already had to put off our wedding because of Rhiannon's condition and when I got sick," Shauna said. "When Rhiannon was in intensive care, Alan turned to me and said 'life is too short, if we don't get married while Rhiannon is here we never will.
"We're a very close family and decided the wedding had to be about the three of us. We exchanged rings with each other and with Rhiannon, symbolising our family."
Skydive
Recently Alan took part in a skydive to raise money for Bee for Battens. He's also qualified as a classroom assistant.
"Rhiannon has taught Shauna and I so much," he said. "If we can do anything to give something back we will. Shauna also works as a volunteer social worker to help other families going through this. As far as I'm concerned if it helps, I'll throw myself out of a plane any day."
Alan has penned the family's own story for the BBC's mystory programme in which he said:
"People often ask us how we cope as parents and we answer 'we don't cope, we live.'
"The support my wife and I have for each other, our love for each other and Rhiannon, the amazing support we have been given from our family, friends and the local community. I like to think that this story shows that no matter what happens in your life it is how you choose to face it and live it that counts.
"Rhiannon has taught us so much and given us so much strength that we rarely see her disabilities anymore, all we can see is the truly amazing and special gift that God has seen fit to bless us with. We don't know how long we have left but we live the most of each and every day; mum and I are stronger and closer now than most couples. Our love has truly grown, we know that when Rhiannon's time comes we will have no regrets, she has lived more in her life than most people 2 or even 3 times her age.
"She has taught us to be thankful for the slightest things, to praise the smallest achievements for the successes that they truly are, with Rhiannon as our teacher we take nothing for granted but see every little thing for the miracle that it truly is. As I lift her on to my lap before taking her to bed I am filled with an enormous sense of contentment knowing that the one place where I can guarantee that she will go to sleep is in my arms, so few dads get to do what I have done and for that I have an amazing daughter and beautiful wife to thank.
Life is good no matter what happens – it's how you live it that counts."
Recently International Recording Artist and Songwriter Liz Madden was named as patron for BEE FOR BATTENS, The Saoirse Foundation.
For more information on the charity log on to www.beeforbattens.org
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Sunday 27 May 2012
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