‘You feel everything… but you feel numb’: The reality of having a child with CF

"Can you really do this?"

Bernie Martin is a mother-of-two from Dublin. Aside from that, her daily routine differs quite extensively from most parents as her youngest child was diagnosed with Cystic Fibrosis four years ago. Bernie's daughter, Eva Rose, is five-years-old. When she was three-and-a-half-weeks of age (and through the newborn screening test), doctors were able to confirm that she had Cystic Fibrosis. Since birth, life has not been an easy ride for Eva or her family: between endless trips to the hospital, a daily routine that involves nebulisers and chest physio, and a selection of medication which could involve up to 20 capsules a day, it's not the stereotypical life of a five-year-old. However, with strength, positivity, and hope for the future, they battle each day as it comes and this is Eva's story told exclusively to HerFamily by her mother, Bernie.

"I knew nothing about CF. I didn't even know she had all the classic symptoms from birth - her skin was peeling and she losing weight despite feeding well, it all was really quite distressing as I didn't know what was going on," says Bernie.

Following her newborn screening test, Eva Rose was referred to for a sweat test. To do this, they had to stimulate her skin to get a sweat sample and test it. People with CF have a higher level of salt in their skin and therefore this was the determining factor.

"We almost knew she had it at this stage" Bernie explains. "You can't help it, you end up going onto Google and crying for hours at night as everything is so negative" she continues.

Knowing that her daughter's life could be cut short broke Bernie's heart; the average life-expectancy of a person with Cystic Fibrosis falls roughly between 30 to 40-years-old. "You end up grieving the life you thought your daughter would have. It is an out of body experience and I just kept thinking initially 'this must be someone else's story'" Bernie reveals. After Eva Rose's diagnosis, Bernie returned to her job. However, Eva Rose hit a bad patch after her 2nd birthday while her mother was away on a work trip, and the child needed to go to A&E. Bernie said she could never forgive herself for not being there in that moment and therefore made the decision to address her work/life balance.

"I made the decision to go freelance so that I had control. When she is not well and needs more of my support she comes first and work second. Bernie explains: "It was a hard one to call as it is a case of emotional stability versus financial stability, but I would never forgive myself if something happened her while I was at work and I couldn't be there for her."

Eva Rose also suffers from asthma and requires oxygen every time she catches a respiratory virus - which was three times over 14 months after she turned two-years-old. But now Eva's daily routine involves nebulisers and chest physio, as well as prophylactic antibiotics, digestive enzymes which count for 20 capsules a day, as well as vitamins. This routine can take up to two hours daily when Eva is well... but it can double in length when she is sick.

"Right now she's in good health but it can change in the blink of an eye, it is a rollercoaster" states the Dubliner.

At the moment, Bernie is gearing up to compete in the VHI Women's Mini Marathon which takes place Sunday, June 3, 2018. Competing every year for Cystic Fibrosis Ireland, Bernie gathers together a group which call themselves 'Eva's Divas'. She says that when it comes to fundraisers like this, 'the emotional support is as important as the money raised'. And Bernie believes that social media has also played a massive part for her in receiving that key, emotional support. Explaining that because people with CF cannot meet each other for fear of crossing infection, CF mammy groups have been a lifesaver.

"You make some amazing friends and receive incredible support through the forums," Bernie reveals.

So what does the future hold? Well, Bernie is optimistic, full of fire, and resilience as she looks forward in hope.

"I'm always looking longterm, at research and trials, there is so much progression medically, it gives me much more hope.

"I do it as much for me as for Eva, because if I am hopeful, it transfers to her."

Other than that both Eva Rose and Bernie take things day-by-day, taking monthly swabs of her lungs and keeping up to date with how well she is doing clinically.

"You must always be prepared and adaptable for whatever is thrown your way and other than that just keep reading and learning because knowledge is power and it makes such a difference."

You can keep up to date with Bernie and Eva Rose over on Bernie's blog here. You can also sign up to fundraise for Cystic Fibrosis Ireland at this year's VHI Women's Mini Marathon by clicking here.