I have known Ellies mum and family for a very long time as family friends from myself being a neighbour to Ellies mum when she was young.

Watching Ellie as she makes her life journey with her rare condition cystinosis makes me really proud of her as she just gets on with it being her happy little self.

Ellie and her twin sister Molly have just turned 6 and attend the local school where I work. I want to raise some awareness of her condition and raise some money for the Cystinosis Foundation UK charity.

My husband Michael Coates, Step children Lewis and Daisy Coates and my son Oliver de Rosenwerth, have taken the plunge to attempt the tough mudder obstacle course on 5th September 2021. This is a challenging course but should be fun on the way. I asked them if they would do this challenge for a charity and they all agreed that Cystinosis Foundation UK charity would be just the one as I work closely with Ellie and would love to give her the recognition she deserves.

Please if you can spare any amount to put towards this just giving page and show your support for the team and for Ellie we will be soo grateful.

Thank you

Tough Mudder clip. https://www.youtube.com/watch?v=V-t2Y3N5wBc&ab_channel=ToughMudder

Kat's story, Ellie's mum https://www.raredisease.org.uk/rduk-news/rdd2021video-katsstory/?fbclid=IwAR2sn_WgLK3s5Tju7vnfaaUExEIz5QGeTE2BHFGdclTqL-ExkfeO6UqxpoA

Ellie's story. https://youtu.be/XwZrzb9m5z8

Cystinosis is a very rare genetic disease that affects approximately 190 people in the UK and about 2000 people worldwide. It causes the amino acid ‘cystine’ to accumulate in the body’s cells. Over time this affects various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Very few people have heard of Cystinosis, including many medical professionals.

Because Cystinosis is so rare and impacts on such a small population, research money is scarce to nonexistent. Currently there is no cure, just a lifetime of treatment to try to slow down the deterioration. In the past it was rare for people with Cystinosis to survive into adulthood but thanks to charities such as Cystinosis Foundation UK there is real hope. The organisation funds research into the condition, provides support and advice for patients and families, and raises awareness of Cystinosis among the medical community.