Grace was born 6 weeks prematurely in August 2017 and after a couple of difficult weeks in neonatal care, she was strong enough to go home. What followed was not expected...

On the 29th of January 2018 Grace was found by her parents at home having a full tonic clonic seizure. She was rushed to Colchester A&E by ambulance but her seizure was not able to be controlled. She could no longer breathe by herself and she was sedated and intubated to keep her stable and safe.
Grace spent four days in Addenbrookes Intensive Care Unit and was then allowed home. No exact answers were given but it was suspected there was an underlying genetic condition. On returning home she had a further seizure and again, ended up in Intensive Care in St. Mary’s Hospital in London.

Grace was given her diagnosis in July 2018, a mutation of a gene called RHOBTB2. This causes epilepsy and development delay. It is extremely rare and Grace is only one of approximately twenty five known cases around the world. The only medical literature available is two studies which suggest Grace may never walk or talk and will have limited comprehension of the world around her.

Grace has suffered further severe seizures in March and April of 2019.

However, she is the happiest and most beautiful little girl who lights up any room she is in.

Please help us in our fundraising efforts to give Grace the best opportunities in life. All money raised provides Grace with intensive physiotherapy sessions and specialist equipment to ensure she can can live life to the full!

Please visit "Hope For Grace" on Facebook and Instagram to follow her journey.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.