Belfast Telegraph

Sunday 13 July 2014

I want to walk, to dance, to live... brave Derry child's 'bucket list'

Nicole McBride, seated centre, with mum Shona, brother 5-year-old Kalum, dad Michael and sister 3-year-old Kayla.
Nicole McBride, seated centre, with mum Shona, brother 5-year-old Kalum, dad Michael and sister 3-year-old Kayla.

At nine years old, every little girl should be obsessing about pink, painted fingernails and dreaming about becoming a prima ballerina. Instead, Nicole McBride is focused on achieving everything on her 'bucket list'.

For the Derry girl suffers from a rare genetic condition that means she is unlikely to celebrate the milestone of her 21st birthday.

The bucket list of 16 items would bring a tear to any eye.

Nicole's condition has left her needing a wheelchair. Most heartbreaking among her wishes is "I want to walk", "I want to dance" and "I want to live".

There are other achievable dreams, so simple yet so important to a child – a real baby doll, a dream bedroom and a puppy.

But for the bubbly nine-year-old and her devoted parents, Shona and Michael, their greatest desire is for Nicole – who will one day die from Locked-in-syndrome – to enjoy a normal a life for as long as possible.

And that includes the basic pleasures of life like eating a bowl of "spuds with butter" and her favourite fruit, a kiwi.

Nicole suffers from a neuro-degenerative disease called Ataxia-telengiectasia (AT), which means since the age of four she has had to endure a blood transfusion in Altnagelvin Hospital every three weeks to help her vulnerable body fight off infections. She also gets the majority of her food through an internal feeding tube in her stomach, but can eat a small amount of textured foods for pleasure.

Three years ago she also lost the use of her limbs and is now dependent on a wheelchair.

Mrs McBride said: "The reality is, Nicole could die at any time as she has no immune system."

Even a common childhood illness like chickenpox could prove fatal for Nicole, who was diagnosed with AT when she was just 18 months old.

"We started noticing when she was about eight or nine months that she had got a bit floppy and seemed to slouch to the right hand side. She was constantly covered in bruises.

"Doctors claimed she was just a clumsy child but our health visitor pushed them to investigate and after a week in the Royal Victoria Hospital she was diagnosed with the genetic condition," explained Mrs McBride.

"The social worker broke it to us that she could actually die at any time – and was going to die. Nicole's life expectancy is between the ages of 16 and 21.

"When we were told, it was like running face first into a brick wall," explained Mrs McBride. "I had just lost my second child three days before.

"It was an incredible time. We had tried for five years for me to get pregnant, and then to be told you are going to raise your firstborn to die and to miscarry your second, was a big slap in the face."

And because her condition is so rare, with just six cases known on the island of Ireland, the McBrides have had to rely on the support of the English-based AT Society and the medical knowledge of the specialist AT centre in Nottingham.

Mrs McBride claimed: "The doctors here don't have the experience in dealing with AT patients. When she is sick we usually have to contact Nottingham to get things sorted out."

It is a terrible burden for any parent to bear and has taken its toll on the McBrides.

"A third baby was stillborn and our son Kalum was born blind, but you can't wallow in self-pity. We try to focus on giving our children the best lives possible." The brave little girl knows that one day the condition will claim her life, but for now Nicole is not prepared to give up without a fight.

Her mum said: "Since she found out she retaliates against anything. At times she has told me 'it's your fault I am going to die because you gave me AT'".

No wonder this strong-willed child is trying for as long as possible to be "normal", wanting nothing more than to eat mashed potatoes with her friends in school.

That is why her parents are putting up a fight, knowing that one day she will be reduced to being fed pureed food or totally dependent on her feeding tube.

Her heartbreaking wishes

1. I want to go to Disneyland — achieved

2. I want a small puppy that doesn’t grow

3. I want a robot that can do everything

4. I want a horse or pony

5. I want my legs back so I can run

6. I want a baby doll that looks real

7. I want to see the Lion King

8. I want to ice-skate with real skates

9. I want an over-the-top birthday party — achieved

10. I want to dye my hair blonde with pink ends

11. I want a dream bedroom

12. I want to walk again

13. I want to dance

14. I want to live

16. I want to swim with dolphins

If you can help Nicole achieve anything on her list, contact Lindsay Fergus by emailing lfergus@belfasttelegraph.co.uk or by ringing 028 9026 4358

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