Our little miracle girl has survived against all odds

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1 DISABLED TOT S FIGHT AN INSPIRATION FOR ALL Our little miracle girl has survived against all odds Mum embracing every day she spends with precious daughter BY MAEVE QUIGLEY WHEN Keating was born doctors told her parents she wouldn t live to see the next day. But now three, the little girl is a living miracle, defying the odds. Mum Mary says every day she spends with her is precious after was born with a rare form of spina bifida. The 33-year-old explained: was born with the most severe type of spina bifida you can get. Normally spina bifida occurs down the back. But when was born the back of her neck was open and her brain was outside her body. Mary and partner Danny live in Limerick and Danny has two older children from his first marriage but is their only child together. Mary said: She s my first baby. I found out when we were having our first scan that there was something wrong. Doctors spotted this blip at the back of her neck so they knew there was a problem. Mary had to go through her pregnancy being told the baby she was carrying would not survive. She said: It was very hard for us we were told she wouldn t survive after birth. We were told if she was with us for two hours after birth we would be lucky because any other child they had seen with the same condition hadn t lived. was due to be born in Dublin so she and Mary could get specialist help but she had other ideas. Mary explained: She decided to come a week early so I had to have an emergency caesarean section in Limerick. I didn t see her until she was six hours old and as they wheeled me down to see her, the ambulance arrived to take her to Dublin but I had to

2 stay in hospital because of my operation. I got to hold her for five minutes before she was taken away and I couldn t go with her. I didn t get up to Temple Street Children s Hospital until two days afterwards and the doctors told us there wasn t anything more they could do for her. At that stage Danny and Mary believed they were taking their precious baby home to die. Mary said: They took her off all the machines and I had to sign forms to say there was no point in resuscitating her because there was no chance of a good life for her because she was so ill. We all went home a day later to spend time with the family before she passed as the doctors said she had two weeks maximum to live. But miraculously she is still here with us. Any time the doctors tell y us something seems to do the opposite to prove them wrong. turned three in August and although she needs 24-hour care, her mum insists she s a happy girl who loves music. Mary added: Taylor has movement in her legs and arms but she can t walk. She can t speak, she has cortical visual impairment meaning that her eyes are healthy but by the time the images get to her brain she can t make sense of what she is seeing. She is peg fed so looking after her is a 24/7 job. Mary and Danny get 32 hours a week help from the Jack And Jill Foundation and LauraLynn House offers respite once every two months so her parents can get a break. is just one of more than 300 children who use the services of, a specially adapted ambulance set up and run by Tony Heffernan who lost two children to Battens Disease. And Mary is thankful her daughter can be brought in comfort to respite and for hospital appointments. She said: It is very tough going. Taylor had her first operation when she was four months old we were told she wouldn t survive that because half her brain was outside her body with a sack of fluid around that. Getting the operation was a big risk and she could have died in surgery but we had no choice other than giving her that lifeline to see if she would pull through. Taylor is defying the odds thank God. And the is amazing the crew are so friendly and they make you feel so relaxed. Coming up the road I know she is in good hands and the medical team will back us up if something happens or if she has a seizure. is a very content and happy child and we don t know what the future holds for her, so all we can do is take each day as it comes now. We would be lost without help from the crew and also the support Tony and Mary Heffernan offer to other families as they know exactly what we are going through because they ve been there too. news@irishmirror.ie Any time doctors say something seems to do the opposite MUM MARY ON HOW HER DAUGHTER BEAT THE ODDS

3 BIG LIFT Mary and beside the BIG LIFT Mary and beside the

4 LEGACY Tony Heffernan with wife Mary and kids Liam and Saoirse

5 WHEEL WONDER Mary and Taylor Rose Keating on-board the CHRISTMAS APPEAL