It’s almost a year to the day since we got the news that our 5-year-old daughter has a rare, progressive, muscle-wasting condition.

Right now, the impact is mild. She can walk, run, jump and dance, but struggles with tiredness and muscle cramps. But we know that she’ll gradually lose strength and mobility, and by some point in adulthood, she will need a wheelchair and other physical aids to help her live her life.

There’s no treatment or cure.

There’s no point pretending it wasn’t a devastating diagnosis. Yet over the last year our family has learned a huge amount about how the world works (or doesn’t) for disabled people. And maybe I’m in denial, but there are lots of positives.

But some of the negatives first.

The world is not designed for people with disabilities

As a designer, I talk a lot about designing accessible products and services so that no one feels different. But so much of how things operate is unintentionally bad – buildings with steps not lifts, a lack of benches in public places, even door handles at an unreachable height. No one ever looked at these things and said ‘we must design them so disabled people are excluded’ – it’s just that no one thought about inclusion up front.* They rarely do.

Right now, this isn’t a big problem for our family – we can adapt our activities accordingly. But wouldn’t it be great if we didn’t have to? And wouldn’t it be great if no one had to?

I wrote down all the people who are now involved in our lives:

• neuromuscular consultant
• neuromuscular care adviser
• heart and lung specialists
• local hospital paediatrics department  
• neuromuscular physiotherapist  
• occupational therapist
• local physiotherapist  
• SEN co-ordinator at school
• local authority (if we need to go down the route of applying for extra funding to meet her needs at school)  
• DWP and benefits – we don’t need this yet but will probably have to apply for DLA at some point

These people don’t all talk to each other, and no one is going to join everything up for us – we need to navigate the complex systems ourselves, learning who to speak to about what, and where and when we have to push for quicker action. I can’t imagine how challenging this is for parents dealing with more severe and multi-faceted conditions.

I feel what seems like an absurd level of gratitude

No one wants to learn that their child has a disability. But so many things make us feel incredibly grateful for the way things turned out.

First, we found out almost by accident, as a by-product of tests for something else. It could have been a much longer and more stressful process. I’ve heard that it could take years of investigations before getting an accurate diagnosis, because it’s so rare that most doctors have never seen this condition. Knowing while she’s young and before she’s too severely affected gives us time to get the right support in place.

Second, it makes me feel so, so grateful for all the things we’re able to do as a family right now. Once covid is over we have plans for travel and adventures – we'll do them while we still can.

Third, she has the support of a kind, clever, funny, talented and beautiful big sister. I really believe their relationship and the way her sister looks after her will help sustain her when times are hard.

And lastly, she is beautiful, clever, strong, stubborn and determined. Being disabled won’t stop her from being any of those things. She’ll undoubtedly face challenges from all angles, but none of that can take away who she is and the potential she has.

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*I recommend Technically Wrong by Sara Wachter-Boettcher for more about this