A woman has been "stuck" in one room for more than 24 months as she battles a rare brain disease. Moyamoya Disease - affecting one in a million people - causes Daisy Simpson's brain to shut off.
The 34-year-old was diagnosed in June 2021 following a stroke and a brain bleed earlier that year. It took visits to six hospitals and multiple neurologists to finally pin down her condition which has since deteriorated rapidly.
Each month she suffers multiple transient ischemic attacks (TIAs) - resembling mini strokes. She also has reduced vision, uncontrolled body movements and difficulties walking.
Daisy fears she is getting worse. And she has been told, without brain surgery, she may only live another five years.
"The strokes are caused by starvation of oxygen to the brain," she said. "It's been very sudden really, I had no neurological issues before summer 2020.
"I had breathing issues; I would often get sick but I would always get better. Now they think the operation is a 50/50 chance on the table. They don't know how beneficial it will be."
As reported by EssexLive, she is now completely reliant on carers. Since March this year, she has been under the care of the Mid and South Essex Integrated Care System.
She claims her flat in Brentwood in Essex is not suitable to her needs. The wheelchair she uses cannot squeeze through the doorway from her main room into the hallway or bathroom, meaning her carers have to lift her.
"I would like my care to be as supportive as possible," she said. "If there were two things the services could do, it would be a bed and a wheelchair; we can do practical things like a bed and wheelchair.
"I just feel upset because so much of this is not my fault, it's just been rough. The care situation is awful; they can't get the wheelchair in and out of the door so I've been stuck in the same room for 24 months.
"Everything is made harder by the fact that I am in an environment that's not suited for care. I've been stuck in the same room with deteriorating health and all I do is go to hospital appointments. But to physically get out of the flats is almost impossible."
Carers are having to lift her 20 stone body in and out of the chair, putting them and her at risk, she said. "It's been awful but I am not one to give up easily, but I know my body is giving up," she said.
"I will be trying to fight it on my death bed. It's not something I'm doing by choice but it's necessary."
She added: "There's so many little things that could be done to improve the quality of life. It's just become words and it feels like I have been removed from this as a person."
The Mid and South Essex Integrated Care Partnership were approached but a spokesman said they do not comment on individual cases. However, he confirmed the partnership has received Daisy's complaints and would respond directly to her.
Daisy's friends have launched a GoFundMe page to try and raise money for her ongoing care and improve her quality of life. To donate, click here.
