On the 28th of June, I went into Scarlett’s room to wake her up for school and found when rolling her over that she had died in the early hours of the morning from a massive seizure in her sleep. 

Scarlett had a condition called Dravet syndrome, a life- limiting neurological condition which presents in seizures that can be unstoppable along with global developmental delay. 

She lived for a lot longer than what was predicted and we count ourselves very lucky to have been fortunate enough to have her in our lives for the amount of time that we did. Needless to say that knowing this is not much consolation and her sudden and unexpected death has come as a massive shock to us, and all who have known her throughout her very short (by comparison) life. 
Scarlett was only five days off her 16th birthday when she died. 

Anybody who had the opportunity to meet her and get to know her will agree that she was for lack of better words, a little tinker, and in her earlier years she was known within the family as ‘stinkerbell’ and more recently such nicknames like Swiper and Shazza. 
Scarlett would light up every room she walked into and made her presence very well known.

When you have a disabled child you very quickly get thrown into the world of closed doors, frustration and constant fighting on behalf of your child to enable them to live as much of a normal life as possible. 

Miles, Scarlett‘s father and myself have battled tirelessly on behalf of not just her, but of all the children and young adults that we have come across on our journey with Scarlett for the right to be able to have fun. Scarlett was all about fun and of course naughtiness! She had character to boot and was incredibly cheeky. A few months after her death, the school rugby team decided to create a man of the match award in her name. The cup is to be awarded to the man of the match who has the most fun, a recognition that speaks volumes about the girl. 

Scarlett had many favourite things, she absolutely loved the Care Bears, Dora the Explorer, Jake and the Neverland Pirates, Sonic The Hedgehog, The Smurfs and most importantly My Little Pony. She would go absolutely nowhere without Rainbow Dash, Applejack, Twilight Sparkle, and Pinkie Pie. Her favourite place other than home was her fortnightly stay at Fairlawns Respite Centre in Ashford. This space enabled her to be herself with her own friends, doing everything she wanted. Fairlawns respite centre is devastatingly oversubscribed and in high demand, something you never realise until you are thrown into the world of disabilities. Another thing you never realise is how grateful you are as a parent to be able to take advantage of a few hours or days of respite from the 24/7 demands.  

Fairlawns is a 1970s purpose built unit with a generous amount of garden that has had a 1/2 hearted effort shown to the once hidden people less fortunate, highly challenged and undervalued in our communities. These children and young adults, once embraced, can teach us that the challenges life throws at us are just that, a challenge. However we have a sadly strange way of recognising them and their strengths. The facilities created for the able bodied and ‘normal’ society are highly funded and well supported. Not so for the community's special members.  Scarlett’s legacy as we see it is to leave behind not just a catalogue of memories but also a tangible experience for her friends and all who follow them. We have teamed together with Fairlawns staff, friends and family to create just that. We want to give an experience by way of a sensory garden and fun space for the children to enjoy and have fun, to experience and relax, to be themselves and learn. With the kindness, love and generosity of our family and friends we have managed in just a few weeks to raise in excess of £7000 however with minimal research it is already apparent that this is a small splash in the ocean for what it will cost. We are approaching local businesses and people to generate support either financial or donations to help create, as a team, a garden to honour our special people and their courage and determination to face all life challenges. 

There are very few rewards that have meaning to these individuals and the simplicity of a space to explore, grow, imagine and immerse will bring so much joy to so many of these children. 

The Aim of the Project:

To design an inclusive, interactive and creative space for children with disabilities to enjoy, including a sensory garden and large play area. 

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