“We will encourage and nurture him through the good and bad times”: Charlotte’s story

A bundle of joy 

My grandson Jace David Michael Allen was born on 28 May 2022, weighing in at just 5lb 11oz. Born with a gorgeous head of dark hair, he was a bundle of joy with so much love around him, and at first we assumed a healthy baby boy.

Jace was three weeks old when his mum Katie was told by the midwife that he might have CF. It was the last thing we were expecting. We all felt numb; we cried and did not know what to say. We were aware the condition is hereditary, but had no family members on either side with CF.

They sent us to an appointment at the children’s ward of the RVI in Newcastle the next day. By then none of this had really sunk in. Like anyone else would – we googled. We were getting more and more concerned for Jace. We just couldn’t understand, why him? We almost felt cheated.

We arrived at the hospital and met the head consultant who was absolutely amazing and went through everything with us. We asked whether they could have it wrong? Did they need to test Jacob or Katie? They said no as they were 100% sure. It was a full day of learning about CF, meeting lots of people in Jace’s personalised care team, who all explained their role and how they would be involved in the ongoing care for Jace until he reaches adulthood.

We will encourage and nurture him through the good and bad times

It has come as a major shock to all the family, but hey, it makes Jace that little bit more special. We are all aware of what he can and cannot do, what to avoid, and how to keep him in the best of health by ensuring he gets his medicine every day and lots of physiotherapy. We feel that he must live as normal a life as possible and we will all be there to encourage him and nurture him through the good and bad times.

I knew nothing about CF at the time and feel that creating awareness is key for rare conditions, and especially where there is a lack of funding from the Government for research. We are relying on people with CF and their families who have been touched by the condition to be the main source of raising funds.

The future is bright for Jace

The future is bright for our Jace, we will make sure of that. We are getting involved with the Trust for all those diagnosed with CF, to ensure they can have a better life journey. Things need to change. I will be campaigning for financial support for working people with CF and parents who have to take time off work or away from the family home.

I also believe that we need to highlight discrimination in the workplace,  and also when trying to obtain things like insurance and mortgages. CF may be an invisible disability, but it is essential that the support for people with CF is there when they need it. Employers should be treating everyone as equal in the workplace, giving people with CF the same benefits and opportunities as everybody else. I feel very passionately about this, and through my role, will be campaigning hard alongside the Trust to make sure this happens.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 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.

Donate now