For the second part of February, we’re delighted to be supporting the Cystic Fibrosis Trust. The Cystic Fibrosis Trust is the only UK-wide charity dedicated to creating a brighter future for everyone affected by cystic fibrosis. Formed on the 20 February 1964, the Trust has continued to drive up standards of clinical care, invest in cutting-edge research into the causes and treatments for the condition, campaign for equal access to transformational therapies, and provide information, support, and advice to everyone affected by cystic fibrosis.
For two weeks after Harper was born, we thought we had a happy and healthy baby girl. But on day 16, I had a call from Sheffield Children’s Hospital explaining that a nurse was on her way to speak to us about Harper and her heel prick test result. She turned up, sat down and explained that Harper had cystic fibrosis (CF).
We took Harper to the CF unit at Sheffield Children’s Hospital that same afternoon and met the whole CF team. It was a complete shock to the system, and I felt a sense of grief towards Harper; like I’d lost my healthy baby.
At first it was very hard to comprehend and process, I found it difficult to adjust to the medication and physio – it was like overnight I had become Harper’s nurse and full-time carer.
We try not to let CF get in the way of living a normal family life. However, if any of the kids (I have two stepchildren) have a cough – especially a wet one – we have to be extra careful. One year on from Harper’s diagnosis, the kids are really understanding with things like hand washing, Harper’s physio and medication, and I think it’s important to be open with them about her condition. In the beginning, talking out loud about Harper’s CF was really difficult, but I started posting about it on my Instagram, like a diary, and it was my way of dealing with it.
Don’t Let Cystic Fibrosis Define You
The Trust means a lot to me and my family. For me, the Trust is non-judgmental space. There’s always someone to reach out to and it has put me in touch with many mums in my position, and I’ve also had some mums get in contact with me for support.
My advice to other parents is to remember that having a child with CF is not the end of your life. Staying at home may feel like your safe space, but there is so much for your child to see and do. Having CF shouldn’t have to define their life or yours.
Donate some or all of the profits to Cystic Fibrosis this February and beyond, when you scrap your car or van with Scrap Car Comparison. Find out more, read our FAQs on donating through your vehicle.