Hannah Cummings

In loving memory of Hannah, who sadly passed away age 10. Parents Mark and Fiona, and brother Reuben, share more about their incredible wee girl, who loved life.

Hannah, our first child, was born premature at 34 weeks. She had her first seizure at 5 months old. From then on, the first 3 years and 2 months of her life were a blur. There were a total of 6 times where Hannah needed to be sedated and ventilated and at these times she was transferred to Glasgow Children’s Hospital. The journey there would be terrifying. Only one of us could go with Hannah in the ambulance, while the other would drive the journey from Falkirk to Glasgow alone.

Hannah was 3 when she received a diagnosis of Dravet Syndrome - mutation of the SCN1A gene - and throughout her short life, Hannah’s seizures were extremely difficult to control. It was agreed, when Hannah was 4 years old, that she fit the criteria for the Fenfluramine trial. As part of this process, numerous tests were carried out, including a heart ultrasound and echo. This is when we found out that Hannah had a hole in her heart and because of this, she wasn’t permitted to take part in the trial at that point.

Hannah bravely went through successful keyhole heart surgery at age 4. Since then, she was able to access Fenfluramine on compassionate grounds. This made a huge difference to Hannah’s and our lives, with Hannah having a spell of 6 months seizure free. We went from being constantly on edge, pulling over on the hard shoulder of motorways while Hannah had a seizure, delaying or cancelling holidays depending on how she has been feeling, putting her into the recovery position on the floor at the shops with many eyes on us when she’s suddenly had a seizure, to feeling more confident, less fearful and usually able to spot the triggers in advance. Hannah’s quality of life improved considerably, and she also benefitted from our reduced stress levels and could take part in more activities.

Over the years Hannah has been one strong girlie. She brightened up any room and loved interacting with adults especially. Hannah had a natural instinct for knowing when someone needed a cuddle. She enjoyed laughing and was able to understand more than she could tell us.

Hannah loved basketball, being outside, going for walks with her Grandad, his dog Smudge and our dog, Timmy. She would've thrown the ball and fed Timmy treats all day if she was allowed! She loved books, puzzles, choosing songs from YouTube, Peppa Pig, Hey Duggee and Tipping Point. As a keen football fan, she would get excited, jumping up and down in front of the TV, watching with Daddy. She loved water and would do anything to get to it!

We feel so blessed to have had her in our lives. We will always love our wee girl. She has taught us so much, has taught us to accept that we can't always be in control and to take each day as it comes. Her enthusiasm for life was always inspiring and she will always be remembered as an absolutely amazing girl despite her difficulties.

Love you so much, Hannah.

Daddy, Mummy and Reuben