WELCOME TO OUR HOME!

Now that we’ve welcomed you into our family and shared quite a lot of our private lives with you, WELCOME TO OUR HOME!

Mum and Dad are really going through hell right now. It’s an incredibly difficult time for our whole family, both mentally and physically.

Before I became a little SMA warrior, my parents had big plans. They wanted to make our home nicer. Everything had been planned down to the very last detail. In June, we were supposed to go on our first family holiday as a family of three. While we were away, a company was going to renovate our home. We were meant to return from our holiday to a finished, newly renovated, lovely-smelling little house.

But in April, just one phone call turned our lives upside down.

We now spend our time in hospital, Mum had to cancel our holiday, and, above all, our renovation plans had to change drastically.

Because my diagnosis requires (and will continue to require) a great deal of money, Dad has to do everything himself, with help from his friends and acquaintances, so that he and Mum can save money for the rehabilitation stays I need to achieve the best possible results.

Trying to cover my treatment, our regular living expenses, paying people to do the work, and still being able to enjoy at least a little bit of life — all on one salary and a tiny allowance — is simply beyond our family’s means. They are trying so hard, but it just isn’t possible.

That’s why Mum has decided to ask you for help, too, through this page and by sharing our story. Later, she will also set up a transparent bank account for me.

Dad is beginning to run out of strength, but he keeps reassuring Mum and me that he’ll manage.

P.S. If there happen to be any more people willing to lend him a hand with the fence and garden, we’d be very grateful!

At the same time, my parents decided to completely change their plans for the garden and create step-free, wheelchair-accessible access everywhere, so that I can be independent in the future and, if possible, get into the house on my own.

Even though everyone believes this may never be necessary, and Mum keeps telling me that they will do everything within their power to make sure it isn’t, we also have to prepare for the “worse” scenario.

There have been changes inside the house, too. Dad has designed everything to be fully accessible. He had underfloor heating installed especially for me, so my little feet will stay nice and warm.

The room that was supposed to be Dad’s little hideaway has been turned into a home gym where I can do my exercises. He has also had a custom-designed shower area installed, with access tailored to my needs.

So much has happened all at once. We are all very tired, and to some extent, sad, too. But we are HAPPY that we are together and that WE HAVE EACH OTHER.

E.