Elena’s story: “Through fundraising, we can take back control”

What was Joshua’s diagnosis like?

Joshua was born six weeks premature by emergency C-section, and I felt totally unprepared. Following his birth, he was diagnosed with meconium ileus (a bowel obstruction) and was taken to  AlderHey hospital as his stomach was distended - we were told this was a classic presentation for CF. He needed bowel surgery which involved a stoma. For the following 6-8 weeks we travelled back and forth to to AlderHey with Joshua being nursed on the neonatal surgical ward. His cf was confirmed by a heel prick test. He came home for good after 3 months only to return briefly for two weeks for more surgery, for his stomas to be reversed. For the next five years of his life, we were in and out of hospital learning everything about the condition.

For a nurse, spending time in a hospital when you're not in control is horrid. However, from the age of 6 or 7, it has improved a lot - I think you tend to chill out a bit over the years anyway. I’m quite laid back - he’s got to be just a normal child rather than letting CF define him. He needs to be tough - if I tiptoe and mollycoddle, it won’t be doing him any favours.

Did you know anything about CF before he was diagnosed?

I had heard of CF before but didn’t know much about the condition itself. My background as a mental health nurse has been helpful in understanding long-term conditions versus mental health - I think it allows me to see things differently.

Why did you decide to start fundraising for the Trust?

In a nutshell: because of Josh. There is so much that we can’t control about his illness, but through fundraising, we can regain some of that control. It helps us feel as if we are giving something back and building a better future for him.

The Trust is such a valuable resource that a lot of people with other conditions don’t have in the same way - other charities can become too big and that can dilute their personal touch.

I feel the smaller yet still significant diseases don’t always benefit from the same ongoing fundraising that other charities provide - I don’t want them to go unnoticed and fade into the background. Helping out allows me to feel proactive as –well as directly helping me and my family.

In regard to your previous volunteering and fundraising, what has been the event you enjoyed the most? 

I ran the London Marathon last year, which pushed me as I am not typically a runner. It was very emotional; I am used to cheering people on from behind the barrier, but being on the other side was an overwhelming experience. I wanted to see whether I could push myself to do something significant and different from the usual fundraising I do.

I wanted to show Josh that just because life deals you bad hands from time –to time, it doesn’t mean you should give up - there is always something to aim for and there is always something to push towards.

I like being a part of the CF world, and as there is limited awareness surrounding the condition, I believe it is important to draw attention and educate people. Making CF mainstream and normalising it as an illness that affects a lot of people is how we combat those who are still blissfully unaware. For me, this starts from within my local community and then branches out.

How have you found training for Ben Nevis and Snowdon? What have you done in preparation / what will you do?

Currently, it has been a fine line between trying to get fit and not trying to get ill. I don’t have CF, but I always seem to catch everything going around!

Exercise has always been a part of our lifestyle, and we regularly go out on walks as a family to build up for both Ben Nevis and Snowdon.

On Good Friday this year my husband, my dad (Josh’s 75 year old grandfather who has had an issue with his heart from covid for two years now) and I walked up Scafell Pike. We’re also attempting our own version of the three peaks.

Why do you think others should also sign up and fundraise for the Trust?

Mainly as it is such a wonderful community, it is a big enough charity without it being too big that you feel as though you get lost. It has still got that personal touch - both the events and the community teams make an effort to get in touch and stay in contact with you. There is always someone at the end of an email or phone call. Ultimately, it’s about being part of a bigger community that understands what you’re going through.

What advice would you give to other parents of children with CF?

Just remember that they are, above all, still your child. All children have varying degrees of difficulties throughout their lives: it doesn’t have to be a significant illness. No child is perfect, but they’re perfect to you - remember that you had them, knowing that you’d love them regardless.

It can be scary being a parent to a child with a condition like CF, where things are constantly changing all the time. Yet, it is still important to remember that every child we see is different, they might have the same mutation or the same diagnosis, but they’re still an individual.

And accept the help. Using resources doesn’t make you a failure: it makes you a stronger person. Acknowledging that you aren’t sure what you’re doing and asking for the help you need is what charities like the Trust are for. Rely on your community.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.