Caoilte Fitzsimons with parents Robert and Fiona
Little Caoilte Fitzsimons is fighting fit after receiving the life saving operation doctors had refused to give her.
After months of battle her parents Fiona and Robert were given the news that doctors had finally agreed to carry out a tracheotomy on the nine-month-old baby girl they had previously sent home for end of life care.
Caoilte suffers from spinal muscular atrophy (SMA), a devastating genetic disease that claims the lives of children before they turn just one year of age.
Yet in the USA any child born with SMA is automatically given a tracheotomy, in most cases drastically improving the quality and quantity of life.
Determined their daughter received the same treatment they launched a loving campaign that finally paid off last week.
Speaking to the Sunday World last night the family were overwhelmed with joy at her progress since the operation in Belfast’s Royal Victoria Hospital last week after a dramatic medical U- turn on the life or death decision.
The bouncing baby girl is now sitting up and has said her first words, she is also surviving without an oxygen mask for the first time in five months.
Her heart-warming progress is defying all the odds her condition had stacked against her.
Her parents and campaigning uncle Conor Fitzsimons never gave up on their belief that the simple procedure would give Caoilte a better standard of life.
Caoilte has proven them right.
“She is up there now in Intensive Care shouting all over the place!” said relieved dad Robert.
“One of the nurses told her to say bye bye to mummy and daddy and all we heard was ‘bye bye’. It's amazing and this from the baby who was not supposed to even speak.
“All she has done is smile and she is a lot more comfortable without all that other stuff on her face. She has really come on since the operation, just like we knew she would. We are so proud of her.”
Despite their overwhelming happiness they are haunted by the thought that the situation could have ended differently.
“When we think how close it came for her not to get the operation it terrifies us. We were so close to losing her and the chance of that was increased by the medical professions refusal to carry out the tracheotomy for so long.
“We researched the procedure and know from other people in other countries that this is the only chance people with SMA have and how successful it can be. We know of a girl with SMA who had the tracheotomy who is now 16 years old.
“It has been a battle for us but it was one we were determined to win and thankfully we did, we are just happy that it finally happened and that it has done what we believed it would for Caoilte,” Robert said.
Just last month doctors had given Caoilte no hope for a future advising her loving parents to take her home for the last few days of her young life.
Yet the young North Belfast couple refused to leave the hospital, continuing with their fight for their precious daughter to be given the right to life by being offered the medical procedure.
After three months of fear and frustration and endless meetings with the hospital trust they achieved what they wanted and now they are turning their attentions to planning their future with their precious daughter.
“Every time we walked up the stairs to Caoilte’s ward we didn’t know if she was going to be dead or alive. We went through that countless times every single day and the stress of that is horrendous.
“Since she has had the tracheotomy the relief has been unbelievable, we know she is a lot more stable than he ever has been and that she is getting stronger every single day. We are so glad we never gave up on her, not that that was ever an option. Doing our best for her is our priority,” he added.
“We would like to thank everyone for the support they have given us in the past few months, the support they gave the campaign for Caoilte to receive the tracheotomy. Or family, friends, political parties and all the staff who have looked after our daughter so well, they have become a second family to us. Without them we couldn't have achieved what we have,” he said.
And Caoilte keeps on surprising everybody with her own strength and determination.
“Everything the doctors said our daughter wouldn’t be able to do she has done it and she is only nine-months-old. She has endured in the past few weeks more than anyone in a lifetime would and she is still smiling. Does that sound like a child who doctors sent home to die? They had given up on her but we hadn’t, we knew this was what was best for our own daughter and we have been proved right."
A fundraising match will take place today at Donegal Celtic in West Belfast at 2.30pm. All proceeds will go towards Caoilte's much needed sensory room and kick start the fundraising campaign for local girl Ruby McKeown who suffers from cerebral palsy.
Anyone wishing to donate can do so by logging on to http://www.gofundme.com/7vi6ew