Creating Special Memories for Élodie

We are a group of parents raising money to support our daughters’ wonderful football coach James, his wife Evie, and their beautiful daughter Élodie.

Élodie was born on August 30th 2020, in between lockdowns. James and Evie said that becoming parents was better than they ever could’ve imagined it to be. Élodie is such a ray of sunshine - her smile and laughter light up the place she is in. She is very cheeky and she definitely knows what she wants!

Sadly, after a year’s battle to be taken seriously, Élodie was diagnosed with a very rare disease called Tay-Sachs. This disease affects 1 in every 360,000 children and has an average life expectancy of 4 years old. It is a genetic metabolic disorder which causes a build up of substances in her body which causes damage to her brain.

Élodie’s condition is regressive which means she will slowly lose the skills she once had. In the time since diagnosis even, she is like a completely different child. Élodie has lost the ability to swallow safely without food or drink entering her lungs. As a result she is now fed through a tube into her stomach. Élodie’s condition will reduce her sight until she is blind and the same will happen to her hearing. Élodie has never been able to walk but she has lost the ability to crawl and sitting is difficult. She has tremors which affect her limbs and she struggles to play like other children her age.

Whilst Élodie has been stripped of the chance to have a normal childhood, she faces every day with a smile. She is able to show in small ways she is still that cheeky monkey that her family and friends love so dearly.

James, Evie and the rest of their family are now putting their energy into focusing on what Élodie can do rather than what she can’t. Like most parents, they had visions about places they would take her and experiences they would do together. There is a lot that they will never get to experience with Élodie but there are also many things that we can make possible for them that will provide memories that they can hold dear for the rest of their lives.

Evie and Élodie (and her baby brother Alfred) can often be found at the side of the football pitch supporting James and cheering on our girls teams whenever that is possible for them. James gives so much time, patience and support to our daughters through his coaching and is one of the most passionate but also patient football coaches we know. That is why we are determined to give James and his family the same support back for his daughter and help make their lives a little bit easier when times are particularly tough for them.

We have set up this Go Fund Me (with James' approval) to help fund a range of activities and experiences that will give their family precious time together and allow them to make lots of happy and special memories with Élodie. Additional money raised will be used to offer financial support with Élodie’s treatment.

Any contribution you are able to make will be greatly appreciated.

Thank you!

West Kent District Schools FA Parents