Myself , Russel Rose and Daniel Dawson will be running the Brighton marathon on the 6th April 2025. We are running to raise funds for my cousin Charlie and his partner Charlotte’s beautiful little girl Celine who was born with a very rare genetic condition called myotonic dystrophy.

Any donation big or small will be received with a warm heart and very much appreciated.

Please have a read of baby CCs journey so far below:

My name is Celine, but all my friends call me CC.

I was born at just 27 weeks old and I weighed only 860grams.

After a gruelling journey through multiple neonatal intensive care units, overcoming many life threatening complications, being resuscitated multiple times and fighting for every single second I have been alive I was then diagnosed with a very rare genetic condition which will severely impact my life.

The condition is called myotonic dystrophy, a multi organ, multi system disorder which at present has no cure.

https://my.clevelandclinic.org/health/diseases/24516-myotonic-dystrophy-dm

CC has the most severe form of the disease and her life expectancy is severely impacted, some children don’t survive past 18 months and with the congenital form CC has the onset of symptoms are already evident and impacting her daily, the condition is degenerative and relentless.

My mummy and daddy continue to fight tirelessly for me and desperately want to be able to support me throughout this journey with the many therapeutic and clinical interventions currently available both within and outside the UK. This involves equipment which will enable me to have a better quality of life.

We are campaigning to raise in excess of £200,000 in order to explore stem cell therapy and other experimental treatments.

To achieve this goal we desperately need your help.

CC deserves the world and all the beautiful things it offers that we so often take for granted.

Please, help in supporting me to have the fighting chance to live life to the fullest.