We live in Bingham, Nottinghamshire and my daughter, Ciara, is 16 years old. She has an extremely rare muscle wasting condition called Charcot Marie Tooth Type 2a. This affects her as messages don't get to the muscles from the brain via the nerves. Since diagnosed at the age of 4, she has had multiple operations to try and help her maintain function in her legs. Unfortunately, her muscles are profoundly weak and she has been unable to walk or stand for 4 years. She is now wheelchair bound. Everyday things which most people take for granted are impossible or at best, extremely difficult for Ciara. She relies on myself, mum, for her care needs. Ciara relies on me entirely for daily tasks any able bodies person would find a doddle. So I help her with dressing, positioning and mobility. We had to move house recently and our new house is great, but Ciara doesn't have a bedroom or wetroom and like anybody, Ciara needs her privacy and a bedroom more than anything as her bed is currently in the living room.
We are fundraising towards £20,000 needed to adapt our home to meet Ciara's ongoing needs, enabling me to continue caring for her at home with my family. Attached is a letter from our Occupational Therapist who has helped us with applying for a Disabled Facilities Grant from Rushcliffe Borough Council. This outlines the work needed to build a rear extension for a level access bedroom and wetroom, together with a proposed plan of the works. Planning Permission was granted in February this year.
Since Ciara and her brother, Sid, lost their dad to cancer in November 2019, each day has been a constant battle for them. More so for Ciara as her disability is very frustrating for her.
Ciara is my 16 year old daughter who was diagnosed with Charcot Marie Tooth Type (CMT) 2a, when she was 4 years old. CMT is a muscle wasting condition and she is now unfortunately, wheelchair bound. Ciara and her brother, Sid, lost their dad to cancer in November 2019, just one day after his 50th birthday.
We had to move house in October 2021 as my family circumstances changed. One of my older twin boys moved out on his own and I couldn’t afford to stay in the house we were in.
We need to have a rear extension done at the new house to give ciara a bedroom and level access wetroom. Her bed is currently in the living room and she has no privacy whatsoever.