She was just 7 years old and the most comforting piece of advice she could give us was:

“Please rest assured, she can have as many open heart surgeries as she needs”

This took some processing.

It was also a really devastating experience, as none of the doctors knew much about this condition.

Carney Complex. Only 500 cases in the world and my little girl had been diagnosed.

This came with worry, fear, panic and so much uncertainty.

With limiting life expectancy and so many unanswered questions.

She was 10 when she had her first surgery, thankfully it wasn’t anything to do with her heart and everything to do with two lentigo’s on her forehead and lip, and blue hue mole on her back. They removed them to ensure they weren’t cancerous and provide more research.

Thankfully it wasn’t cancer 🙏 they later did more research to confirm that these lentigo’s have proven through research that they don’t turn into cancerous cells, so no more surgeries for those would be required.

We began to relax a little, in regards to health and hospital visits became a little less frequent.

My heart skipped a beat. I took her to hospital and for 6 weeks we were under strict rest. Nothing to raise her heart beat and plenty of rest.

At this stage I realised it was time to reach out for help and support. We had no idea what the future held and so we applied for a wish of a lifetime.

My little girl was granted a wish by starlight. We were given experiences that no money could buy.

These experiences gave us hope, memories, laughter and much needed distraction from the bleak reality of our world.

I pledged that I would one day give back to Starlight and face one of my biggest fears… heights and falling.

So in June 2025 - date to be confirmed I am taking the plunge and jumping out of a plane to raise much needed funds for this beautiful charity.

In addition to the sky dive…

I’m running the half marathon in May 2025

And walking the Yorkshire 3 peaks in August 2025

I would love you to get involved in anyway you can

1. Join me… become a part of this journey and help me raise funds to help other families in need.

2. If you can’t join me, donate, sponsor me to do this dive and lets help make more children’s lives a little better with memories and experiences that money can’t buy!

For more information on starlight, see below ⬇️

Starlight is the UK’s leading charity for children’s play in hospitals and hospices. Evidence shows that play has the power to reduce fear, pain and trauma during treatment and recovery from illness - boosting mental and physical health and resilience. We work to ensure every child has the opportunity, space and time to experience play. We also undertake research and campaign to ensure children’s right to play is protected and provided for.