Our Penny

My daughter Penny has a very rare genetic condition relating to the TBL1XR1 gene. As a result, she is severely learning disabled and non-verbal. She also has sleep difficulties, reflux, an autism diagnosis, and may have a bicuspid heart valve.

Despite all of this, Penny is a very happy and active little girl. She has endless energy and spends her days running, spinning, jumping, and even doing amazing headstands. She loves watching traffic and will let you know if she’s hungry or if the wrong TV programme is on!

In April 2024, Occupational Therapy carried out a full risk assessment of our home. They confirmed that Penny urgently needs an extension and internal alterations to the house to provide:

• Level access

• A padded bedroom

• A wet room with a changing bed

• Safety adaptations to the windows in her bedroom and the front room to prevent climbing and serious injury

We have worked incredibly hard to get this far, but there is still a shortfall in funding. Without the padding for Penny’s bedroom and the necessary window safety work, her room will not be safe or fit for her needs once the other adaptations are complete.

Penny has no sense of danger and does not understand the consequences of some of her behaviours, which puts her at constant risk of injury. As Penny’s mum, all I want is for my daughter to be safe in her own home.

If you are able to help in any way — whether through a donation or simply by sharing this page — we would be truly grateful.

Thank you for taking the time to read Penny’s story.

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.