Our Ella and her special family

Ella needs your help now!! Ella has White-Sutton syndrome, which is a rare neurodevelopmental disorder, this along with Epilepsy, means it takes two people to lift her safely; Ella also requires bigger and better wheel chairs, sensory equipment, and mobility Aids.

Fund raising is vital to give her and her family a better quality of Life.

This is what we are fundraising for!

White-Sutton syndrome is characterized by a wide spectrum of cognitive dysfunctions and developmental delays

Ella was born in September 2017, it was known to her parents in pregnancy there may be complications and when she was born she spent the first month of her life in special care unable to feed at all and was referred for various genetic testing. She then began to have severe seizures and was diagnosed with Epilepsy. The genetic test findings came back in 2021 diagnosing her with White-Sutton syndrome.

Family Love

Ella’s direct family of mum, dad and sister (8 years old) constantly giving her the love and care she needs. Her network around her are all there to support the family.

Ella is now five years old we all love her, her lovely smile, her gurgles, her noises as much as any other nephew/Niece but she has different needs.

When visiting hospital appointments, emergency treatment her sister is on endless visits to neighbours, family, and kindly friends we want to make sure the family are able to provide a better lifestyle for Ella, and all the family.

The funds we desperately need are to adapt their house for Ella to be lifted safely, we would like to buy the equipment, mobility aids needed to make her life easier both for her parents and 8 year old sister, and give Ella the best quality of life we think she deserves.

There is only so much equipment and home adaptions funded by government grants, the rest has to be paid for by Ella’s parents, who both work very hard.

This is hugely financially detrimental to the whole family and particularly to Ella's 8 year old sister (Ella’s biggest fan, she always has a smile for her sister), who is having to go without quality family time and activities due to the debt caused by these costs.

Please can you help us raise the money required for the necessary equipment and support,to give this young little family the life they, not just Ella, but the whole family deserve.