Leia is 3 and has RMND1 mitochondrial disease; one of fewer than 100 people in the world. Leia has already gone through more medically than most adults endure in a lifetime. She recently had a kidney transplant, generously donated by her dad.

Leia is profoundly disabled and our home is unsuitable for her needs. She depends on a wheelchair as she can’t move her own position. As Leia gets heavier she will require an electronic hoist as it will be impossible for us to transfer her. She also needs an accessible wet-room and bedroom downstairs.

As Leia's parents, we are determined to ensure that she has the best quality of life possible and a home addressing her needs is vital. Due to the increase in the cost of building materials and no comparative increase in funding available to disabled children for adaptations, we must raise our own funds.

We have been advised by our architect and council that we are required to pay £59,000 above the Disabled Facilities Grant she has been awarded. Due to Leia's 24hr care needs, we are unable to work full-time. This is a huge amount of money to source. We have some savings, which we will use, but without some extra help we’ll struggle to realise the adaptations.

What Leia needs:
• External ramp into house and garden: £2,800
• External door for house entry: £1,600
• Wide internal doors for wheelchair access: £1,000
• Accessible wet-room: £8,800
• Accessible bedroom (requires extension): £10,000
• Electronic H-Track Hoist: £4,000
• Suitable floor surfaces: £2,500
• Adaptations to allow hoist installation: £700

It is so difficult to ask for help, but this is an essential project. Any improvements in Leia’s quality of life ensure a positive environment in which she and Robin can flourish. We hope you understand and know that any amount can help us.

We will keep this page updated with things as they happen and with your help hope to start before the end of the year.

Thank you so much
Love Katie, Tom, Leia and Robin