A Space For Boots

We’re completely out of our comfort zone setting this up, anyone who knows us as a family knows that we would rather be the helpers than the ones who need help. But right now we need help and don’t mind asking if it means my daddy will be able to have a comfortable accessible space at home.

I’ll try to explain some of our backstory. My name is Maggie. My mummy Alison and daddy Raymond (better known as Boots) have been married for 25 years. They have 6 children, 5 of us are teens and young adults and then our little sister is 13. In 2019, Daddy was diagnosed with a rare type of pulmonary fibrosis called NSIP - which was caused by breathing in cement dust over 43 years working on sites as a bricklayer. He left our house at 5am and he would return about 7pm and he did this commute 5 days a week for years and years so that he was home to see all of us in an evening. Even after working hard all day and driving 150 mile round trip he never missed our matches or school plays and was always home to carry on with us or read us a story and say goodnight.

When he received the diagnosis in 2019, he was given 2-3 years but there was a clinical trial drug available that his consultant offered hoping that it would stretch that to 4-5 years. It did the job and now in 2024 he is still with us. However, he has been getting worse the past year and now uses oxygen 24/7 and can no longer get out.

The Trust had said to put a stair lift in to help as he has recently been sleeping on the sofa a lot of nights, as the stairs get harder and harder for him. They also make him cough and it takes a while for it to settle when he finally gets up to bed.

But last week, daddy was rushed into hospital with pneumonia. It was touch and go for a few days as he was so ill with the pneumonia, nevermind on top of his pulmonary fibrosis. They have also scanned him in hospital and found that the fibrosis has significantly got worse since last year’s lung scan and is covering most of his lungs so he’s in one of the later stages of his illness now.

Him and mummy decided that he now needs a space on the ground floor of our house. He already has a multidisciplinary team who come out to the house for some of his check ups and tests so we are going to put a hospital bed into our living room and adapt the room to use as his own space. As we are such a big family in an ordinary house it’s the only space available. But we only have a downstairs toilet and sink, we have no shower facilities downstairs. We think the room could be made into a wetroom. Even though it isn’t huge we think he’d have the space to shower and dress himself easily and he wouldn’t be at all closed in which is really important as he has got really claustrophobic as his breathing has got worse. It would also fit in a wheelchair and carers when he needs those. The plumbing is already there, we’d just need to strip the room right back and refurbish it.

I know that things are very tight for everyone right now so even just sharing the Go Fund Me would be brilliant. If you ask anyone round Keady my daddy is always the first to volunteer helping anyone who asked him. And he never made a fuss about it or looks for credit or thanks. he just always wanted to help if he were able to. So now it’s his turn to accept some help to make him more comfortable.

If you’re still here thank you for reading!