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Carrigaline Man’s Parachute Jump For Cystic Fibrosis

Carrigaline Man’s Parachute Jump For Cystic Fibrosis

Carrigaline man Dominic Payne is preparing to do a Parachute Jump to raise funds and awareness for Cystic Fibrosis Ireland. The story of why he’s doing it is a personal one, following his daughter’s diagnosis with Cystic Fibrosis earlier this year. Here, Dominic shares his family’s story.

My wife Sinead and I were on the countdown to the birth of our first child when our world was turned upside down. On 9th of January during a routine 36 week scan our consultant said, “I cannot see your baby’s organs there is a massive mass in her stomach”. It was indicated to us that our baby might have down syndrome.

In following days while trying to remain calm with numerous medical tests and a transfer from CUMH to the Routunda in Dublin it was found our little baby Emma has a cyst on her ovary so big it had baffled her doctors. Amazingly the consultants at the Routunda were able to drain her cyst in utero but unfortunately the cyst kept filling and Emma was born by emergency C-section on 17th of January.

What was supposed to be a joyous occasion was also met with shock as again upon delivery we were told Emma did not look like a normal baby and she had the features of a baby with down syndrome. This did not really sink in as until it was confirmed we were trying to keep an open mind.

I stayed by Emma’s (we lovingly call her peanut!) incubator morning and night and on the 20th of January Sinead finally got to see Emma and we were given the news that her swelling had gone down and down syndrome was no longer likely but she would be kept in Dublin for monitoring.

On the 31st of January we finally got to bring Emma home to Carrigaline and settle into family life after getting the all clear from her tests.

However, this joy was short-lived as a week later my wife got a phone call from CUH from a cystic fibrosis nurse asking Emma to come in for a sweat test. After panic and plenty of internet searching we figured that it was possible Emma might have cystic fibrosis. Which was confirmed the next day by the CF consultants.

We were given a day to let the diagnosis sink in before we had to learn to start Emma’s treatment of daily medications and physiotherapy. At this stage as first time parents we were mentally battered and broken.

Unfortunately, CF is a progressive illness and while there have been massive advancements in medical treatment, it still remains an incurable illness. The impact on Emma means that she has numerous medications to take for the rest of her life and requires daily physiotherapy as well as being susceptible to respiratory infections. Thankfully she is flourishing at present and has her routine check-ups at the CF clinic in CUH which we are thankful to have this clinic in Cork. Unfortunately, Emma cannot mix with other children with CF due to the risk of infection they pose to each other and meeting up with other CF parents and their children means it can be an extremely isolating illness.

So, from feeling so helpless we decided we wanted to try and give something back and support other parents like us. I have decided to do a sponsored skydive to help raise funds for CF Ireland, accompanied by my brother and four work colleagues we have named ourselves team Peanut and currently have a go fund me page and are collecting sponsorship as well. We have set a target of €5000 and team Peanut is asking for the public support in helping us achieve this goal and hopefully exceed it!

We would like to take this opportunity to say how supportive the community of Carrigaline has been to us from the public health nurses who check Emma weekly to the staff at Walsh’s Pharmacy Carrigaline in dealing with Emma’s medications. Also Dan Howard and Foley’s plumbing who helped us move to a house which is more suitable for Emma’s condition. We would also like to say Thank You to the CF team in CUH for the ongoing support that have given us and the ongoing care that they provide for Emma.

Here is the link for the gofundme page

http://www.gofundme.com/parachute-jump-for-cystic-fibrosis

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