Fundraising For Faith's Future

Hi, I'm Stacey and I've started this fundraiser on behalf of my good friends Rachael & Michael's daughter, Faith.

Faith is a very special 5 year old girl who was born prematurely weighing just 3lb 9oz. Since her stay in Neonatal at birth Faith has faced many challenges, including a bleed on the brain and a hole in her heart. After not meeting some developmental milestones, it was thought Faith had Cerebral Palsy, but a subsequent MRI ruled this out. However, this MRI brought about some incidental findings, including abnormal lymph nodes which resulted in a terrifying few weeks with Oncology. (Thankfully nothing cancerous)

Genetic testing was the next step for Faith, her mum and dad, and although we all knew Faith was special, we weren't prepared for her to be quite so unique! The gene which has been found to carry a pathogenic variant is known as ELOVL1 - so far only 4 other recorded cases with very little known about it.

Faith has Stage 3 Chronic Kidney Disease, Lower Limb Spasticity, Ichthyosis, Atrial Septal Defect, Dystonia among other things and sees a plethora of medical professionals. Faith is currently a full time wheelchair user and wears AFO splints. She may soon have to undergo surgery to relieve muscle tightness in her legs.

In spite all the above, Faith is a smart, funny, charming little girl who faces everything with resilience, determination, and a smile on her face.

I've started this fundraiser to help ease the financial burdens for Faith's mum and dad. Rachael is Faith's full time carer & Michael works. They are getting adaptations done to the house to make it more accessible for Faith and although they will receive a grant for this, it won't cover everything that needs done. They would also like to purchase some equipment for Faith to use at home such as a mobile stander, and pay for some private therapies not available to them on the NHS. Any donations will be gratefully received & will be used to enhance Faith's quality of life.

Thank you for reading.