Category Archives: Uncategorized

One of the biggest battles we’ve faced hasn’t been Isla’s diagnosis.

It’s been getting her the education she deserves.

For three years, we’ve fought to find a school that could meet Isla’s needs.

Three years of meetings, assessments, paperwork, phone calls, emails and waiting.

As a parent, it’s heartbreaking knowing your child deserves to learn, make friends and experience school, but being told time and time again that no setting can meet their needs.

People often assume that once a child has an EHCP, everything falls into place.

Sadly, that isn’t always the reality.

For Isla, it meant years without a suitable school place.

While other children were starting school, making memories and settling into classrooms, we were still fighting for someone to say, “Yes, we can support her.”

In the meantime, Isla has received one-to-one education at home.

We’re incredibly grateful that she hasn’t missed out on learning, but home tuition was never the future we imagined for her.

Every child deserves an education that meets their individual needs—not one where they have to wait years because no suitable placement is available.

Our fight wasn’t just about getting Isla into any school.

It was about finding the right school.

A place where she is safe, understood, included and given every opportunity to reach her potential.

I know there are so many families facing similar battles, and I want you to know you’re not alone.

We’ll continue to fight for Isla, just as we always have, because every child deserves the chance to thrive.

Chloe x

When people read our story, they usually read about Isla.

They read about diagnoses, appointments, milestones and challenges.

But behind every story like hers is a parent trying to navigate a world they never expected to be part of.

Before Isla was born, I imagined motherhood much like everyone else does. I pictured school runs, playdates, family days out and watching my children reach milestones without a second thought.

Life had other plans.

Over the years I’ve learned more medical terminology than I ever thought possible. I’ve sat in countless waiting rooms, attended appointments I can’t even remember and spent many sleepless nights worrying about the future.

I’ve celebrated achievements that some people take for granted and I’ve grieved milestones that didn’t come when I hoped they would.

But this journey has also taught me strength.

It has introduced me to incredible parents, amazing professionals and a community of people who understand exactly what life with a child with additional needs can look like.

Most importantly, it has taught me to appreciate every step forward, no matter how small.

I started Beyond The Diagnosis because I wanted somewhere to share the reality of our life – the highs, the lows, the worries and the victories.

If our story helps just one family feel less alone, then sharing it is worth it.

Thank you for being here and following our journey.

Chloe x

When people meet Isla, they often have questions.

Some ask about her diagnosis.

Some ask about appointments.

Some ask what she can and can’t do.

And that’s okay.

But if I’m honest, there are other questions I wish people would ask too.

I wish people would ask what makes her laugh.

I wish they would ask about her favourite songs.

I wish they would ask about the cheeky smile she gives when she knows she’s getting away with something.

I wish they would ask about how much she loves being around her little sister Violet and baby brother Arthur.

I wish they would ask about her personality before her diagnosis.

Because Isla is so much more than a list of medical terms.

She is funny.

She is loving.

She is determined.

She is brave.

She is stubborn when she wants to be.

She is a daughter, a sister, a granddaughter and a friend.

Her diagnosis is part of her story, but it isn’t the whole story.

One of the reasons I started this blog was to help people see beyond the diagnoses.

To see the child first.

The personality first.

The smile first.

The little victories first.

Because behind every diagnosis is a person with hopes, dreams, likes, dislikes and a unique personality all of their own.

And if there is one thing I hope people take away from Isla’s journey, it’s this:

Don’t just ask about the diagnosis.

Ask about the child.

You might be surprised by what you discover.

Chloe x

When people think of childhood milestones, they often think of first steps, riding a bike, learning to swim or starting dance classes.

For children like Isla, milestones can look very different.

Sometimes our celebrations are for things other families might never think twice about.

Holding a spoon independently.

Taking a few extra steps.

Trying a new food.

Following a simple instruction.

Sitting through an appointment without becoming overwhelmed.

To the outside world, these moments may seem small.

To us, they’re huge.

When your child faces challenges due to a rare chromosome condition, you learn to appreciate progress in a completely different way. You stop measuring success against what other children are doing and start focusing on how far your own child has come.

I used to wonder if people understood why we celebrated things that seemed so ordinary.

Now I don’t.

Because every milestone represents hours of therapy, encouragement, patience and determination.

Every achievement tells a story of a little girl who keeps trying, even when things are harder for her than they are for most children.

Isla has taught me that progress isn’t always fast, and it isn’t always obvious.

But it matters.

So today I’m celebrating every step she’s taken, every obstacle she’s overcome and every milestone still to come.

Because every single one is worth celebrating.

Not because it’s easy.

Not because it’s expected.

But because it’s hers.

And I couldn’t be prouder.

Chloe x

When I imagined becoming a mum, I pictured dance classes, birthday parties, after-school clubs and all the things many parents take for granted.

Life with Isla has looked very different.

Recently we spent some time away at a caravan, making memories as a family. Watching the other children running around, joining in activities and making friends reminded me how much our lives have had to adapt.

There are things Isla can’t do that many children her age can. She can’t simply join a dance class, run around independently or take part in activities without extra support and planning. Sometimes that can be hard to watch as a parent.

But over the years, I’ve learned something important.

Comparison steals joy.

Because while Isla’s journey may look different, it is no less beautiful.

The milestones we celebrate may seem small to others, but to us they are everything. Every step, every new skill, every moment of independence has been fought for with determination, therapy, patience and love.

At the caravan, while other children were doing things Isla couldn’t, Isla was busy being herself. Smiling. Laughing. Exploring the world in her own way. Creating memories with her little sister, Violet, and baby brother, Arthur.

And that’s enough.

I’ve stopped wishing for the childhood I imagined and started embracing the childhood Isla has.

It isn’t the journey we expected, but it’s ours.

And despite the challenges, I wouldn’t change the incredible little girl who has taught us so much about resilience, patience and unconditional love.

Different doesn’t mean less.

It just means our adventures look a little different. 💜

Chloe x

People often see the appointments.

The hospital visits.

The specialists.

The diagnoses.

The tests.

What they don’t see is everything that comes afterwards.

They don’t see the exhaustion that follows a day spent answering questions and hearing medical terms you’ve never heard before.

They don’t see the endless phone calls, paperwork and referrals.

They don’t see the hours spent researching conditions that have no clear answers.

Most of all, they don’t see that life carries on.

The washing still needs doing.

The dinner still needs cooking.

The younger siblings still need your attention.

The baby still wakes in the night.

Life doesn’t pause while you’re trying to process difficult news.

Sometimes people assume that hospital appointments are the hard part.

Often, they’re not.

Sometimes the hardest part is driving home afterwards.

Trying to make sense of everything you’ve been told.

Trying to stay positive.

Trying to be strong for your child when all you want to do is cry.

But then something happens.

A smile.

A laugh.

A cuddle.

A milestone you never thought would come.

And somehow you find the strength to keep going.

Because that’s what parents do.

We carry on.

Not because it’s easy.

But because our children are worth every challenge, every sleepless night and every uncertain day.

Behind every diagnosis is a family doing their very best.

And behind every appointment is a child who deserves to be seen for so much more than a medical report.

Chloe x

When people talk about Isla’s journey, they often talk about me, her dad, her grandparents or her therapists.

But there is someone else who has been part of every step.

Her sister, Violet.

From a young age, Violet has grown up around hospital appointments, therapy sessions and a life that sometimes looks a little different to other families.

Yet she has never questioned it.

To Violet, Isla isn’t a diagnosis.

She isn’t a chromosome deletion or duplication.

She isn’t the child who needs extra support.

She’s simply her sister.

I’ve watched Violet adapt to Isla’s world in ways that make me so proud.

She celebrates Isla’s achievements as though they are her own.

She understands when things take a little longer.

She helps without being asked.

She encourages without even realising she’s doing it.

Most of all, she loves Isla exactly as she is.

As a mum, I often worry about whether I’m getting the balance right.

Whether all my children feel equally seen and heard.

But watching the bond between Violet and Isla reminds me that love doesn’t keep score.

It simply shows up.

People often tell me how amazing Isla is, and they’re right.

But today I want to celebrate Violet too.

Because growing up alongside a sibling with additional needs shapes a child in ways that are hard to explain.

It teaches patience.

Compassion.

Understanding.

And a kind of empathy that can’t be taught.

I couldn’t be prouder of the sister Violet is becoming.

And I know Isla couldn’t ask for a better one.

Chloe x

Sometimes I think about the mum I was when Isla was first diagnosed.

The mum sitting in appointments trying to understand words she had never heard before.

The mum desperately searching the internet for answers.

The mum who was scared of what the future might look like.

The mum who felt completely overwhelmed.

If I could go back and speak to her now, I know exactly what I would say.

I would tell her that it’s okay to be scared.

I would tell her that she doesn’t need to have all the answers.

I would tell her that some days will be harder than she ever imagined, but some days will be more beautiful than she could ever dream.

I would tell her that Isla will achieve things people said might never happen.

I would tell her that one day she will watch Isla proudly walk holding one hand.

I would tell her that the little girl she worries so much about will become the strongest person she knows.

I would tell her that she will meet people who understand, support and encourage her when she needs it most.

Most importantly, I would tell her not to spend so much time worrying about tomorrow.

Because while she is worrying about the future, she is missing some of the magic happening right in front of her.

The smiles.

The laughter.

The cuddles.

The little victories.

The moments that make everything worthwhile.

This journey isn’t the one I imagined when I became a mum.

But it has taught me more about love, strength and resilience than I ever thought possible.

And if I could go back and speak to that frightened mum sitting in those appointments all those years ago, I would simply say:

“You’re going to be okay.

And so is Isla.”

Chloe x

People often see me sharing Isla’s achievements, her smiles and all the things she can do.

And trust me, I am proud of her every single day.

But something I don’t talk about enough is the grief that comes alongside raising a child with complex needs.

Not grief for Isla.

Never Isla.

I grieve for the things that should have been easier for her.

The things other families sometimes take for granted.

The endless appointments.
The uncertainty.
The waiting.
The questions that never seem to have answers.

I grieve for the moments when I watch children her age doing things she finds difficult.

And then I feel guilty for feeling that way, because Isla is the greatest gift I’ve ever been given.

The truth is that both things can exist at the same time.

I can be heartbroken for the challenges she faces and incredibly proud of the way she faces them.

I can wish things were easier for her while loving her exactly as she is.

Being Isla’s mum has taught me that strength doesn’t always look like staying positive.

Sometimes strength is simply getting up the next day and doing it all again.

And if you’re another parent carrying both love and grief in the same heart, please know you’re not alone.

Chloe x

A poem for Isla x

Before the tests,
Before the names,
Before the doctors spoke in words
We’d never heard before,

There was you.

A little girl with a beautiful smile,
Tiny hands reaching for the world,
And eyes that taught us
To see life differently.

The diagnosis became part of our story,
But it never became who you are.

You are courage when the days are hard.
You are determination when the road feels long.
You are joy in its purest form.
You are the reason we keep moving forward.

This blog was born from your journey,
From the tears, the triumphs,
The questions and the answers,
The setbacks and the victories.

A place to share the moments
That often go unseen.
A place to remind the world
That every child is so much more
Than a medical report.

Beyond the diagnoses,
Beyond the appointments,
Beyond the challenges,

There is Isla.

A little girl who has changed our lives,
Touched hearts she has never met,
And taught us that strength
Can come in the smallest of packages.

This blog carries your story,
But more importantly,
It carries your light.

And that light will always shine brighter
Than any diagnosis ever could.

💜

For Isla,
With all my love.

Mum x