When Isla was born, I thought my job would be to teach her everything she needed to know about life.

I thought I would teach her how to be brave, how to keep going when things are hard and how to face challenges with confidence.

What I didn’t realise was that she would be the one teaching me.

Before Isla, I measured progress the way many people do. Big milestones. Big achievements. Big moments.

But Isla has taught me that some of life’s greatest victories are the ones that nobody else sees.

A single step.

A new skill.

A little more confidence.

A moment that might seem ordinary to someone else but means everything to us.

She has taught me patience.

The world moves quickly, but Isla has shown me that everybody’s journey is different and that progress doesn’t need to happen on anyone else’s timeline.

She has taught me resilience.

Despite the challenges she faces, she continues to smile, keep trying and surprise us every single day.

She has taught me to celebrate every victory, no matter how small.

Because when you’ve been told your child may never do something, every achievement feels extraordinary.

Most of all, Isla has taught me to see beyond a diagnosis.

She is not defined by medical reports, appointments or labels.

She is funny, loving, determined, cheeky, strong and full of personality.

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

She is simply Isla.

There are still difficult days.

There are still worries about the future.

But when I look at how far she has come, I am reminded that there is so much hope in this journey.

If there is one thing Isla has taught me, it is this:

Never underestimate what a child can achieve when they are surrounded by love, encouragement and people who believe in them.

And for that, I will always be grateful.

💜

Chloe x

When people see Isla’s progress, they often see the milestones.

They see the smiles, the achievements and the little victories that mean so much to us.

What they don’t always see are the people standing beside her every step of the way.

Being Isla’s mum has been the greatest privilege of my life, but I couldn’t do this journey alone.

There have been moments of worry, uncertainty and exhaustion. Moments where I needed someone to listen, to understand and to remind me that we could keep going.

I am incredibly lucky to have people in our lives who have done exactly that.

Isla’s daddy, Lewis, has been a constant source of strength, support and love. Through every appointment, challenge and milestone, he has stood beside us. He is an amazing dad and Isla absolutely adores him.

Her nanny Jill has been one of Isla’s biggest cheerleaders from the very beginning. She celebrates every achievement, no matter how small, and has always believed in Isla and everything she is capable of.

Her grandad Gary has also been there every step of the way, offering support, encouragement and love. Isla is incredibly lucky to have such a special bond with him.

When I look at how resilient Isla is today, I know she hasn’t built that resilience alone.

She has been surrounded by people who love her unconditionally, believe in her completely and encourage her to keep going.

And as for me, I honestly don’t know where I would be without them.

Their support has helped me through some of the hardest days. They have listened when I needed to talk, picked me up when I felt overwhelmed and reminded me that I didn’t have to carry everything on my own.

This journey can sometimes feel lonely, but they have made sure I never feel alone.

Beyond the diagnoses, appointments and challenges, there is a family standing together, celebrating every step forward.

I am so grateful for every single one of them.

Thank you, Lewis, Jill and Gary, for loving Isla the way you do and for always being there for both of us.

We couldn’t do it without you. 💜

Chloe x

When people see Isla, they see a happy little girl with a beautiful smile.

What they don’t always see are the little victories that happen behind the scenes.

When Isla was younger, doctors told us she would likely spend most of her life lying on her back.

As a mum, hearing those words was heartbreaking.

The future felt uncertain, and there were so many questions that nobody could answer.

But Isla had other ideas.

Today, Isla can walk with one-hand support, proudly holding onto one of our hands as she takes her steps forward.

It may not seem like a huge achievement to some people, but to us it means everything.

Every step represents years of determination, hard work, therapies, encouragement and resilience.

Every step tells a story.

A story of a little girl who continues to surprise people.

A story of a child who refuses to be defined by expectations.

Living with a rare chromosome condition means there are many challenges. There are appointments, assessments and worries about the future.

But there are also incredible moments of joy.

Moments when Isla achieves something people once thought might never happen.

Moments when we stop and realise just how far she has come.

Being Isla’s mum has taught me that progress doesn’t have to look like anyone else’s.

Success isn’t always measured by big milestones.

Sometimes success is a single step.

A new skill.

A moment of confidence.

A goal reached after months or years of hard work.

Those are the victories that deserve celebrating.

Those are the moments that remind us never to put limits on what our children can achieve.

Because Isla is so much more than a diagnosis.

And every day she continues to show us that.

💜

Chloe x

When people hear words like chromosome deletion, chromosome duplication, developmental delay or additional needs, they often imagine limitations.

What they don’t see is the person behind the diagnosis.

A diagnosis can explain challenges, appointments and support needs, but it can’t describe a child’s personality, their smile, their determination or the joy they bring to the people around them.

When I look at Isla, I don’t first see a list of medical terms. I see a little girl who loves cuddles, enjoys being around her family and makes us laugh every day.

I see a proud big sister who adores her two-year-old sister and baby brother. I see someone who works hard for every achievement, no matter how big or small.

There are days that are difficult. Days filled with appointments, paperwork and uncertainty. There are moments when the future feels overwhelming.

But there are also moments of pure happiness.

The excitement when Isla learns something new.

The pride on her face when she achieves a goal.

The way her siblings look up to her and the bond they share.

These are the moments that matter most.

As parents of children with additional needs, we often become experts in diagnoses, therapies and medical terminology. Yet the most important thing to remember is that our children are so much more than any report could ever describe.

Every child has their own personality, strengths, dreams and way of seeing the world.

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

This blog exists to share the parts that don’t appear in medical notes—the love, the laughter, the milestones, the challenges and the everyday moments that make our family who we are.

Because beyond every diagnosis is a child who deserves to be seen for who they truly are.

Thank you for following our journey.

Chloe x

When people hear about rare chromosome conditions, developmental delays and additional needs, they often think about diagnoses, appointments and medical reports.

While those things are part of our story, they don’t tell the whole story.

Our days are filled with family life, laughter and making memories together.

Isla is six years old and currently has one-to-one support while we prepare for her next chapter in September. Every day brings new opportunities for learning, exploring and celebrating her achievements.

She is also a wonderful big sister to her two-year-old sister and five-month-old baby brother, both of whom she absolutely adores. Watching their bond grow is one of my greatest joys. They make each other laugh every day, and seeing the love between them reminds us what truly matters.

None of this journey would be possible without Isla’s dad. He is an incredible father who loves his children unconditionally and works tirelessly for our family. Through the challenges, appointments, worries and uncertainties, he has been a constant source of strength, support and encouragement.

Of course, there are challenging days. Days when progress feels slow, when appointments seem endless and when the future feels uncertain.

But there are also moments that remind me how lucky we are.

The smiles, the cuddles, the milestones that others might overlook, and the love shared between three siblings make every challenge worthwhile.

Life with additional needs has taught our family patience, resilience and gratitude for the little things.

Most of all, it has taught us to celebrate every step forward and treasure every moment together.

This is our reality—not just diagnoses and labels, but a family filled with love, determination and hope.

Thank you for following our journey.

Chloe x

Welcome to Our Journey

Hi, I’m Chloe, mum to an amazing six-year-old girl called Isla.

This blog is our story.

Isla has a rare Chromosome 2q27.3 deletion and Chromosome 8p21.2 duplication, alongside global developmental delay, hypotonia, visual impairment and other complex needs. 

When we first began receiving diagnoses, I felt overwhelmed by the medical terms, appointments and uncertainty. I wanted answers, but I also wanted people to see beyond the paperwork and diagnoses.

Because Isla is so much more than a list of conditions.

She is funny, loving, determined and incredibly brave. She adores cuddles, enjoys sensory toys, loves being around the people she cares about and makes us proud every single day.

Our journey hasn’t always been easy. There have been challenges, worries and moments where the future felt uncertain. But there have also been incredible achievements, moments of joy and milestones that meant the world to us.

I created this blog to share our journey honestly, raise awareness of rare chromosome conditions and connect with other families walking a similar path.

Most of all, I want this blog to celebrate Isla—the little girl behind the diagnoses.

Thank you for joining us as we share our story, our challenges, our victories and everything in between.

Chloe x