About Hope for Hermione

Hermione is an 9-year-old girl from Maidstone, Kent. She is a happy girl who loves life and definitely tries to live life on the edge!

She loves dancing, football and trampolines! She even loves being outside in the garden or swimming!

Her favourite people in her life apart from her mum and dad are her brother Declan and his friend Bobby! There is also AJ who Hermione spends a lot of time with when she is out and about!

Hermione was born in 2015. We were thrilled when she made her arrival (a little earlier than expected)! Having a little girl was everything we hoped for!

Hermione instantly touched the hearts of all those around her, her beautiful smile instantly made everyone around her happy!

As she began to grow up in the first year, Hermione met her milestones, just like any other child and by her first birthday started walking, she had a few words in her vocabulary.

At the age of 17 months, Hermione had her first seizure. Never having witnessed a seizure before, we weren’t sure what had happened. Once she had been seen by doctors it was confirmed that she had had a seizure which had lasted well over 2 hours.

This was obviously very distressing to us as parents and so we began to keep a close eye on Hermione. She continued to have further seizures that were prolonged as well as absent seizures. Hermione was diagnosed in October 2019 with Epilepsy. During this time, we also noticed that Hermione’s speech was significantly delayed, and she was diagnosed with Severe speech and language difficulties.

This started the journey of testing for various epilepsy syndromes, but nothing ever resulted in a clear understanding of why she has epilepsy.

Hermione was then diagnosed with Autism (ASC) in December 2020. This diagnosis left us with more questions than we had answers for.

We were then referred for Genome sequencing genetic testing which has resulted in the diagnosis of the alteration to the gene WDR45.

Furthermore, we were referred to GOSH under Prof Manju Kurian, who is a specialist in her field. This gave us the opportunity to discuss what this diagnosis means and how will Hermione be affected.

This was obviously the worst prognosis we could have received and has left us as her parents, family and friends devastated! How could this even be possible?

Hermione goes to Brownies each week and we had been looking at badges that would be suitable for Hermione to achieve and we came across the Charity badge.

This very quickly became a realisation that although we have received the worst news possible, we still have the ability to make a change and have something good come out of all the tears!

Your support and generosity to raise awareness and funding to develop a cure would greatly improve not only Hermione's life but of others like Hermione to ensure that as this disease progresses there is an opportunity to find a treatment to halt it and ensure that our children can enjoy a long and happy life.