Our daughter Georgia is 17 and has a life limiting condition called Rett syndrome. 

She is severely disabled, requiring 24 hour care in our home. She has a severe form of epilepsy causing her to have multiple violent seizures every day. Because of the seizures Georgia is housebound a lot of the time. 

She suffers with anxiety, breathing problems and has issues around feeding coupled with multiple physical and communication disabilities.

We moved house back in March 2021. Our old property no longer met Georgia’s needs so it was agreed by the local council and Occupational therapist we would move home and apply for a grant to pay for a downstairs bedroom and bathroom with ceiling track hoisting and a special bath.

After going though the process we are now at a standstill because the building costs/materials have risen considerably due to Brexit and Covid. The council will not cover these costs and it’s down to us to find the extra £30k to help build Georgia a safe and comfortable environment to live in. 

We are currently carrying Georgia upstairs to bath her, and lifting her in and out the bath. This is exceptionally dangerous for both her and us.
She’s currently sleeping, eating, toileting in the one room. She is unable to access the kitchen area and she sleeps in our dining room.

Due to her difficult and frequent epilepsy Georgia needs a quiet space and access to her bed on the ground floor multiple times through out the day. Georgia needs a quiet space away from our busy family life when she’s recovering from seizures. She is desperate for a ground floor bathroom with suitable bath so that she can bathe in safety. Having a bath is one of the few activities Georgia can still enjoy.

Georgia is currently on a waiting list for spinal surgery to correct her spinal deformities. We started the process but had to stop due to the fact we can not manage Georgia safety at home post surgery. The surgeon has told us we won’t be able to lift or carry Georgia after she’s had spinal surgery so until we have our home adapted for her, she’ll remain on the list. While time is going by, there’s a high chance she won’t be a candidate for surgery as her spine becomes rigid with time. 

Georgia is a happy girl who loves to be around her family and has a smile that lights up a room.

Please help us to raise the £30k to help make Georgia’s life as safe, comfortable as well as dignified and able to be included in all aspects of our family life again.

Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.