Running Brighton Marathon For Sunny ☀️

Hello! Thank you so much for reading my page. I will be running the Brighton marathon next year for these brilliant charities- Tiny Tickers, Little hearts Matter and The Sick Children’s Trust.

Most people probably know but last year at my 20 weeks scan mine and Matts entire world flipped upside down after learning our unborn baby had a rare series of critical heart defects. Our amazing son Sunny was born on Halloween 2024 and immediately transferred to Great Ormond Street hospital for life saving treatment. What followed was 3 extremely traumatic months of ups and downs, watching him struggle whilst doctors tried to figure out what was happening. We made it home when he was 3 weeks old but were taken back to GOSH in an ambulance after his oxygen levels fell and we stayed there for what felt like a life time. He ended up in emergency open heart surgery this January after we spent a very surreal Christmas and new year me, Matt, Vinnie and Sunny living between the hospital and accommodation next to GOSH provided by The Sick Children’s Trust. It was without a doubt the scariest most debilitating and traumatic months of our lives. There are no words to explain what it feels like to watch your baby deteriorate in front of you, completely helpless and out of your depth. It took so much out of us as a family but we made it through and got him home where he belongs and where he is now thriving and filling the house with the best laughter. I’ve learnt life can get really bloody terrifying but it can also show you a new kind of strength and love you never knew existed.

It's unfortunately far from over for us or him and he will need further treatment and surgery(s). Sunny is a single ventricle baby who has low oxygen levels. His diagnosis is currently still life threatening and life limiting. But there is a chance that this could change if after further tests and scans they believe his heart would be able to cope with something called a Bi-ventricle repair. An extremely complex surgery that could turn around his chances of a normal life. It is a watch and waiting game for us (and not a very fun one), letting his heart grow and seeing how it copes whilst trying to place it at the back of our minds and making sure he has the best life ever. To us though Sunny will never be a hospital diagnosis, percentage or statistic he will always be our irreplaceable little boy.

Both Tiny Tickers and Little Hearts Matter provide post and pre natal support for parents dealing with diagnosis and treatment to inform and empower families. They’re also a life line where you can find similar parents to chat to and other families stories to read. They provide ongoing help, advice, and support groups through the ages for children living with congenital heart defects too. Without all of this it would be an absolute minefield to navigate alone.

Little Hearts Matter is the only specialised single ventricle (half a working heart) charity. We are lucky there is a chance Sunny won't stay single ventricle but the condition is one of the most serious and life effecting for children and young adults.

Tiny Tickers is a heart charity whose mission is not only to support heart families but to train sonographers to detect these heart defects. An early detection significantly improves the chances of survival. Since they formed in 1999 detection rates have doubled. It would have been a very different story for us and Sunny had our sonographer not picked up on it.

Lastly The Sick Children’s Trust supported us when Sunny was either on the high dependency unit or in critical care and we therefore couldn’t stay with him. They have shared houses near GOSH where you can stay free of charge to be as close to your baby as physically possible without the worry or expense of hotels whilst they are extremely unwell. Thanks to them we were also able to have Vinnie with us for Christmas and New Year which meant we could at the very least all be together. They even bought Vin a Christmas present and showed us nothing but kindness and care.

It all sounds very serious and scary and of course it really is but I want to just say my god is Sunny worth it a million trillion billion times over. I'd do it all again in a heartbeat for him, in fact i wish more than anything i could do it all instead of him. I might also be slightly bias but he is the most gorgeous, loving, smiley, guy going. Reaching all his milestones with a grin, curious about the world, loves pasta (who doesn’t) and above all else thinks his brother is the best person ever (even if he whacks him on the head 5 times a day).

It makes me so angry that any baby/child/ family go through what we have, it is incredibly unfair. These 3 charities change the lives of people like us, and I want raise as much money as I can to support them. I’m doing this run for them but also for Sunny who is a lot stronger and braver than I will ever be. If he can get through what he has what’s a marathon hey!?

Thank you!