Sullivan’s Hero's 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.

Sophie is our 4 year old daughter who has Spinal Muscular Atrophy type 1 which is a genetic condition affecting all Sophie’s muscles and more importantly her muscle growth. This condition affects all Sophies limbs and has a dramatic effect on her breathing and swallow muscles. Sophie cannot walk.crawl or sit unaided for any length of time, she has a feeding tube and relies on a number of medical devices to keep her safe at home.

Sophie is a smart and inquisitive young girl who loves to be involved and is full of laughter and fun.

Our current home offers a number of barriers to Sophies health, physical development and her ability to engage in family life. Sophie cannot use her power chair inside due to the lack of space and the width of the doors means that she is unable to enter the kitchen or the dining room.The dining room and living room have mould and damp issues which also causes concern due to the effect that Sophies condition has on her respiratory system.

Sophie’s bedroom is too small for her to play in as her specialised cot and medical equipment takes up the majority of the room, along with this the family bathroom is not fit for purpose or safe for Sophie’s continued use. We are looking to carry out a major project on our house to remove the barriers that prevent Sophie from being the cheeky, independent and sassy little girl that she is in a place that she should feel comfortable and safe.

This will include:

• A two level extension to our original house running along the side and rear of the house, which will provide a larger bedroom with adapted wet room for Sophie and a downstairs storage room with space for a through floor lift and storage of Sophie’s essential equipment and power chair. 

• Expansion of family bathroom to allow space for a therapy bath. 

• Expansion of kitchen/dining room to allow open plan living. 

• Upgrade of heating system and electrical wiring to allow use of lift and hoist. 

• Upgrade to all windows and doors. 

The total cost of the project is £100k and along with a local authority grant for £30k and personal finances (savings, loans etc) we have secured another £45k.

We have exhausted all our options and need help raising the final quarter as work is due to start in March 2021.

Sophie just wants to have the unrestricted movement around our home that meets her needs and keeps her safe.