Esmé's Game

Esmé working hard in her standing frame.

Esme’s game will take place on June 17th/18th 2023 at Watford FC training ground! The match is a 24 hour game with 24 players taking on the incredibly gruelling challenge of playing football for 24 hours. All of this is being done to raise crucial funds for such a wonderful little star in Esme!

To explain how important this fundraising event is... Carly, Esmé's mum and her family are giving updates about Esmé and how we can help her which will be shared on this page:

Esmé... A brave little girl was diagnosed with SCN8A just before she turned 6 months old. It's a devastating form of epilepsy that affects only 650 children across the world. If left untreated it can cause permanent brain damage. Research shows that therapy is key to making progress in children with these conditions.

Now 2 years old, Esmé is having up to 6 big seizures a day, followed by 30 smaller ones in her sleep - DAILY! At times she can be on medication like the below, 4 times a day.

Esmé's daily medication. Carly is working hard to reduce this.

Your donations would fund access to essential, weekly therapies such as hydrotherapy and physiotherapy for Esmé, as well as equipment and social care that is more advanced than what the NHS currently provides. Due to huge NHS staff shortages, her care plan has been paired back to a minimum.

There is so much more out there that could improve her quality of life. https://www.gofundme.com/f/esmes-game

Jay x

The full story....

Esmé was born at a healthy weight, bright, alert...hitting milestones. She was the happiest little girl, full of laughter and smiles.

One day, just before she was six months old, Ezzy began having a type of seizure called infantile spasms. Our health visitor and GP were not initially concerned. The same day I took her to A&E. She repeatedly made the same movements. Fortunately, the consultant on shift recognised the signs, and an urgent EEG was arranged.

I still remember holding her every time she had spasms..unable to stop them or console her. The feeling I got when I was given her initial diagnosis of West syndrome/IS will never leave me. It's a devastating form of epilepsy, which, left untreated, causes permanent brain damage.

We began treatment with steroids, and an AED called Vigabatrin immediately. The spasms stopped the same day. The steroids were brutal and ballooned her little body. She stopped smiling and just groaned and rubbed her head back and forth the entire time she was on them. I thought that was it...this was my baby forever now.

Fortunately, the steroids were used only in the short term, and as we weaned her off them, Esmés beautiful smile returned. It was the most magical moment when she began to laugh again.

A couple of weeks passed, and we began to think she was one of the lucky children with no lasting effects from the spasms...

Initial tests for an underlying cause all came back clear. MRI, blood ect all normal...

Then one night...bam she had a tonic-clonic. Then another. This meant more meds...more panic, and more worry. Seeing your child have a seizure is the most terrifying thing ever.

As we added more meds, Esmé became more sedated. She became more and more floppy. We have tried seven different medications, and none fully controlled her seizures. She has developed other seizure types, such as myoclonic jerks and tonics...she stops breathing during these. I have to carry rescue meds with me at all times.

I have fought and fought and finally got Esmé on the keto diet. This has given us the best seizure control so far. It's a very clever, but complicated diet. Since we started she's gone from up to 3 tonic clonics a day to a few myoclonics.

Esmé is now 2 years old. She can't sit or hold her head. She has to have fluids via NG and has physio, OT, SALT, dietitian, social worker, portage worker, PA, vision support team, neurologist, community nurses...and more involved in her care.

EVERY day is a battle for Esmé. She has to have her blood checked twice a day (every 2 hours when she's unwell), I have to test her tummy PH before I use her tube ...this is minimum 4 x day.

She has a pulseoximiter alarm to wear at night as she is at high risk of SUDEP . Her meals are all calculated and weighed out via a dietary prescription. She has numerous pieces of equipment..specialist shoes, wrists and hand splints...

We have now got a diagnosis of SCN8A. It's a genetic condition thats only known to effect around 650 children in the world. Its life long and is known to be medication resistant.

Despite all her challenges, this girl is so so brave. Every time a seizure knocks her back...she fights. She has relearned how to roll SO many times. She has the most contagious smile and laughter..she is SO so brave, and I am the proudest mother in the world.

How will the fundraising impact Esmé's life?

Research into infantile spasms and SCN8A shows that therapy is key to making progress in children with these conditions.

If Esmé could access therapies such as hydrotherapy and physiotherapy regularly, it could make a huge impact on how she lives her life.

She is also provided with basic equipment by the NHS and social care, but there is much more out there that could improve her quality of life.

Thank you

Carly x