Rome Daniels was born on the 2.01.2018 via c-section , he spent his first month in the world in homerton hospital fighting for his life and wasnt expected to make it , he had a critical high lactic acid level of 12 .

Rome slowly started to get better and was diacharged home and reffered to Great ormond street hospital for further tests to diagnose him and get to the bottom of his high lactic acid levels. Rome was then admitted for a skin and muscel biopsy and then we was left to wait around for answers . In this time we found that Rome had moderate to severe hearing loss in both ears and was given his very first set of hearing aids.

9 months later Rome was finally diagnosed with an extremely rare mitochondrial disease called ECHS1D , being so rare that rome is the ONLY person in england to have this condition. We was told rome would never be able to walk or sit unaided and has a shortened life span of 12-13 years aswell as any normal cold,viral or flu could potentially kill him in the mean time.

Rome was doing so well and was defying the doctors but unfortunalty took a turn for the worst on the 15th of november 2018. Rome caught the very common cold RSV and become critically ill and was taken to great ormond street hospital where he spent the following 2 months fighting for his life. Romes suffered brain damage as a result of this cold and lost the ability to do everything including smile or even eat all head control has been lost and hes gone back to having the skills of a newborn baby.

A clinical trial needs to be funded over in texas which gives my boy a fighting chance of making living with this condition that much easier and potentially giving us alot more years together without the risks of brain damage or organ failure due to a simle cold. We need to raise a min of 50k to get the trial started so i really am desperatly asking you guys for all your help !!

look at this smile , help me keep it in my life forever 💙

I will be doing a 15,000 ft skydive in order to help raise some of the funding towards romes treatments so please feel free to sponser me through this

cure for mito is needed , a cure for rome needs funding !! Please help him x