Vicky Smith and her husband Christopher live in a privately rented three-bedroom house in Stirchley with their four children, one of whom, Kian, was diagnosed with lissencephaly brain disease last year, which is terminal.
The family's home is filled with hospital equipment and large chairs but Kian is isolated in the home as Vicky has to carry him everywhere.
The toddler’s special chairs and hospital equipment are too big for Vicky to move him around the house in, so she has to carry him everywhere while giving him 24-hour care.
The 33-year-old mother said she is exhausted and is desperate for a bigger home so she can properly look after Kian and not have to send him to a hospice if he deteriorates.
Vicky said she has contacted Telford & Wrekin Council for help moving to a four-bed council property, as well as housing associations in Telford and further afield, but both said there was nothing available.
She is now appealing for anyone who can help the family move to a more suitable property which can be adapted for Kian's serious disability needs and give the family more security.
“It’s cruel really for me to have to carry him everywhere,” Vicky said. “Yes he is terminal with his condition but he could have another 10 years, we don’t know, and why should he not be comfortable and struggle like this?
“I am not asking people to feel sorry for me but they need to understand the situation. I need to look after myself and Kian. It’s only going to get harder.
“I am just exhausted. I have to constantly find the energy to take care of him and do all the lifting – I am only 33 and I ache all over, he is quite a big boy.”
Vicky’s husband, Christopher, has osteoporosis, which means he has to be careful with lifting.
Kian was diagnosed on March 25 last year and needs 24-hour care. He is visually impaired, deaf in one ear, tube-fed through his stomach and has no mobility at all. He also has severe epilepsy.
“It’s been a year since I started asking around for help,” Vicky said. “My current landlord has been great, but he doesn’t want the house to be adapted for our needs, which I can understand. It doesn’t need to be a disabled home, as my occupational therapist has said we can find funding to adapt a house.
“My life is very difficult and I don’t see why I should have to keep struggling.”
The house has a Ppod, which is a very large chair, a rotunda wheelchair, a standing frame, disabled pram and a hospital bed. The house is also full of all the food deliveries and equipment sent to Vicky to be able to care for Kian.
“Unless I hold him I can’t get in the kitchen with him as his chairs are too big,” she said.
“It’s the same in the rest of the house, his chairs won’t fit. I’ve been in contact with Telford & Wrekin Council, the MP Lucy Allan, Wrekin Housing Group and everyone I can think of to help.”
“If we had a bigger space it would be so much easier and a safer environment for my other children as well.”