When I'm Worried About My Undiagnosed Child, I Try to Imagine This

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget.

Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility.

No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody.

A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers.

I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child.

All I can do is imagine how Brody must feel.

Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases.

Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot.

Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you.

Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead.

Imagine all of the above and then some.

Then imagine a 6-year-old boy who more often than not has a smile on his face.

A 6-year-old boy who loves to laugh.

A 6-year old boy who has always taken what life has thrown at him in his stride.

A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face.

That’s Brody – a true superhero.

My superhero and beautiful boy.

SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.