A Co Kildare woman recalls how her daughter who celebrated her 21st at the weekend was just one of 102 children diagnosed with a rare condition.
Colleen O'Kelly, who has a rare condition, Joubert Syndrome, has battled the odds. Her parents, Bob and Tina, were informed that she would probably be stillborn. Born completely blind, she now has some level of vision and has an incredible ear for music.
Last Saturday, Colleen joined family and friends in song at The Townhouse in Naas.
Her mother Tina O'Kelly said: "She is like a people magnet. People just fall head over heels with her. We are one of the lucky ones, I have an eternal child. I can lie in the bed with her and sing nursery rhymes to her, when I purposefully put in the wrong word, she will sign the correct one, it is the highlight of my day."
During the early years, having no information on Colleen's condition was a lonely place for the O'Kelly family.
Ms O'Kelly recalls leaving the hospital with no information, but determined, she researched all that she could find on Joubert Syndrome.
She said: "Colleen did not sleep until she was eight, we would be ready to go to the bed, but she would be awake for the night."
It was not until Colleen was eight that sedatives were prescribed for her. The days were jam -packed bringing Colleen to physiotherapy and treatment, while at night, she just did not sleep.
Ms O'Kelly said: "We just got on with it, I don't know how we did it. It made us stronger as a family."
In 2008, Colleen had two of her kidneys removed and spent almost three years on dialysis.
Ms O'Kelly said: "She could be in Crumlin for six to seven months of the year. It was a constant battle, she would get very high blood- pressure. It was not a great time for any of us. Amy was doing the Leaving Cert at the time and would come back to an empty house. I slept on a mattress beside Colleen in the hospital."
Just days before Colleen's 21st birthday on Saturday, she was informed that she will have to undergo major surgery due to Scoliosis.
Ms O'Kelly said: "There is a 97% curve on her spine, it is in the shape of a question mark."
Colleen is now on a waiting list for Scoliosis surgery and is unsure when this will take place. Without the surgery she is at a high risk of getting chest -infections which could lead to pneumonia.
Ms O'Kelly said : "We feel so blessed to have her and our lives have been enhanced by her and she has made us better people.We have been so lucky with the people she has brought into our lives, her service providers KARE have played a major role in helping us bring her on so much from St. Anne’s School in The Curragh to KARE local Services here in Naas now, The Share A Dream Foundation too, they have all played a huge part in our happiness and of course our ever supporting families and friends”
(Photo by Aishling Conway)
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