Jessie currently has a bedroom upstairs with a through-floor lift to take her up there. However, due to the ever-increasing size of her equipment, the lift has become too small and there is not enough space to install a bigger one. In addition, due to the severity of Jessie's seizures, it is no longer safe to bath her in the family bath and she needs a wetroom with a shower bench to wash her safely and in comfort.
For these reasons, we need to build a bedroom and wetroom downstairs to give Jessie plenty of space as she grows and a safe environment for bathing. As there is not enough space to do this in the current layout of our house, we need to build a rear single-storey extension to achieve this.
We have been extremely lucky to secure a Disabled Facilities Grant from West Sussex County Council, but unfortunately this is not enough to cover the cost of the project and there is an estimated shortfall of £40,000. We would be incredibly grateful for any help in raising this additional money, so that we can give Jessie the facilities she needs to be happy and comfortable as she grows up. Thank you so much for your support.
Our beautiful daughter Jessie is now eleven years old. Having been born perfectly healthy, she suffered a severe hypoglycaemic seizure at ten months old, which left her with extreme brain damage. As a result, she is quadriplegic and unable to sit or stand unaided. She is severely visually impaired, fed by gastrostomy tube and cannot speak. She has multiple seizures every day and her muscles are often stiff and uncomfortable. She struggles to regulate her temperature and is sensitive to loud noise and bright lights.
Despite all these daily challenges, Jessie is a happy and fun-loving girl with an amazing smile that lights up any room! She loves being around other people and listening to everyone chatting, especially when there is a good joke to be had. She especially loves her big sister, Lily, who is wonderful with her, understanding Jessie’s many needs and ensuring that she she always feels happy and included.
Jessie loves going to school and has lots of lovely friends there. She enjoys watching the fibre optic lights and bubble tube in the sensory room, listening to music and stories and best of all, going swimming in the hydro pool. She is learning to use her legs to activate switches to communicate. This is a huge challenge but will be a game changer if it allows her to start making her own choices. At home, she likes joining in with baking and making craft pictures, but is not so keen when things get messy and lets us know in no uncertain terms!
Jessie is our little star and we are incredibly proud of her. We are making these changes to our home to make sure she is comfortable, safe and able to join in with every aspect of family life as she grows up.
How much do we need to raise?
We are trying to raise £40,000 in addition to the Disabled Facilities Grant, to meet the cost of the project.
How will this change our lives?
It will be an incredible relief to find the funds for this project so that we can create a suitably large and comfortable space for Jessie downstairs, with a wetroom for safe bathing. We will be able to move her around the house quickly, easily and without the risk of injuring ourselves. Importantly, in the longterm, it will mean Jessie can continue living with us in her family home.
How long will the project take?
The building work is estimated to take four months, hopefully starting in the spring of 2021.