FAY Madeley says she’s “blown away” by her daughter.

That’s Esme.

Kind, loving, determined, funny, inelegant, mischievous Esme.

Born with Down’s Syndrome.

With World Down’s Syndrome day this Saturday (March 21), Fay, from Breinton Road, Hereford, wants others to be “blown away” by Esme.

The little friends four-year-old Esme shares her life with already get what the grownups don’t.

Esme isn’t there to be patronised, she is – first and foremost – a friend who  just happens to have Down’s Syndrome.

And Down’s Syndrome means they get to wear odd socks over a day to represent the additional chromosome that makes Esme who she is.

Just maybe, says Fay, the grownups could follow that example.

Last week, Fay saw Esme in tears after a gruelling run of five specialist appointments in a single day.

A book was all it took to turn those tears to effusive thank yous.

See, while Esme can pass her days like any four-year-old, nothing passes those days like books and the requests for stories are endless.

Fay says Esme’s love of books is inspiring.

But the wider world still reads negative assumptions into Down’s Syndrome.

Assumptions Fay hopes Esme won’t have to grow up with.

Fay has long since shrugged off such assumptions.

She knew they were gone when, expecting Esme’s baby brother Albie, she refused a test for Down’s.

“I felt lucky to not only be waiting to find out our baby’s gender but also the number of chromosomes he had,” said Fay.

“Love doesn’t count chromosomes, I’m not sure who first said that, but never a truer word was said.”

But love doesn’t make Esme’s life easy, with a hefty schedule of challenging specialist appointments to help her physical and mental development.

Sometimes she gets scared and Fay has to boost her strength the way only “mum” can.

For Fay, that need to be strong is compounded by the difficultly inherent in ensuring Esme gets everything she needs, the right regime of additional therapies.  

But when it gets close to too tough, Fay’s thoughts drift back to those precious first moments with that tiny, sleepy, content baby girl “with the bluest eyes” who just happened to have an extra chromosome.

“The words Down’s Syndrome felt like a big label that we didn’t know much about or what Esme may need. But we soon learnt that Esme would show us the way,” says Fay.

Cuddles and milk have fuelled that push past milestones like the 12 weeks it took Esme to smile or the first crawl that prompted a family gathering.

The pace doesn’t slacken with Esme settled in Reception at Hereford’s Lord Scudamore school where “amazing” teachers make inclusion more than concept.

But the friends who flocked to Esme from the off that taught Fay not to fear any development gap as Esme grows up.

From those friends, Fay knows that however wide that gap may seem, it will always be the depth of understanding that matters.