In January 2023 our private landlady served a ‘no fault’ eviction notice on me and my four children as she had decided to sell the property. I was desperate as anyone can imagine. I urgently needed to find accommodation for Amara, who at the time was five years old and has complex medical issues. These include night time nursing support, ventilator care, tube feeding and epilepsy. She is unable to walk, requires specialist support for sitting and is non-verbal. This is as well as her three siblings then aged 2, 10 and sixteen.
After six months the council offered me the only property that they had available, a three bedroom house which had a small dining room and was situated at the top of a steep slope. Whilst they appreciated it did not meet Amara’s needs, they promised that if I took it, with Amara temporarily using the dining room, that adaptions would be made to an adjoining brick outbuilding so that she could have a larger bedroom and a downstairs wet room as well as cutting out the slope and installing a lift to the front door. I was so thankful!
Unfortunately, though surveyors have been and there have been lots of meetings, I have now been told that I, myself, need to raise a minimum of £5000 towards these adaptions! This was never pointed out to me originally!
So the situation at present is that Amara, with her hospital style adult cot, two ventilators, suction machine for her lungs, heart and oxygen monitoring equipment, auxiliary equipment as well as her clothes and toys are squashed into a small room which does not allow for easy hoisting her into a specialist chair. At home she cannot access the bathroom which is upstairs. I am really grateful to her specialist school, who during term time, take time out of her learning day, to give her a shower but during the school holidays she can only have a strip down wash (not ideal during the hot summer months). The only other option is the children’s hospice which, as I have no transport for Amara, costs well over £100 in adapted taxis to get her there. The steep slope requires two people to push Amara up to the front door as the chair and equipment weigh over 100kg and Amara is getting heavier with each year. She is also unable to access the back garden. The Council included in their plans excavating the slope and installing a motorised lift to provide her with easier access to the house. This alone is £30,000!
I know that there is not a limitless pot of cash and am exceedingly grateful to have a secure roof over my families head but as any parent will understand I also want the opportunity for Amara to live as full and normal life as possible by being able to join her family in the lounge and spending nice days in the garden with her brother and sisters.
If you are able to help me fundraise by taking part in events please get in touch. Amara is the most amazing child who has conquered many battles and deserves to live a life that most take for granted. This involves having access to showers when dirty, being able to go in and out of her home, have fun in the garden and having the space to join her family in the lounge to enjoy arts and crafts which she loves doing rather than being confined to her bed.
Thank you so much for taking the time to read this! It means the world to me!
Amara is the most amazing child who has conquered many battles and deserves to live a life that most take for granted.
Lauren Kedwell