At six months old, Lara still couldn't properly hold her head, sit or crawl. While other babies were beginning to explore the world around them, developmentally Lara was still much closer to a newborn. Every milestone came much later than expected.

We raised our concerns again and again, but we kept hearing the same words: “Give her time.” So we did. We waited, hoped and tried to convince ourselves that maybe she simply needed a little longer.

But as the months passed, it became harder to ignore what we were seeing. By two years old, Lara still wasn't walking or sitting independently, and she couldn't eat normal solid food — everything had to be mashed or specially prepared for her.

We didn't know what was causing it. We just knew our daughter, and we knew we needed someone to listen.

After so much waiting, explaining and questioning, we finally met someone who truly listened.

Someone who didn't simply tell us to give Lara more time. Someone who looked at the whole picture and understood why we were worried.

For the first time, we didn't feel like we had to convince anyone that something was different. Our concerns were taken seriously, and the search for answers truly began.

There were appointments, assessments, tests and more waiting. We had no idea where any of it would lead, or whether we would ever find an explanation.

But something had changed.

We were no longer asking someone to listen.

Someone finally had.

When Lara was around two and a half years old, I received a phone call I know I will remember for the rest of my life. I had just dropped her off at kindergarten and was sitting alone in the car when the Habilitation Centre called and said, “We found something.”

I will never forget how those words felt. For so long, we had been searching for an explanation for why Lara was struggling and developing so differently. We had raised our concerns, questioned ourselves and repeatedly heard that we should simply give her more time. When someone finally told me they had found something, the feeling wasn't what I had imagined.

There was relief, because it meant we hadn't imagined any of it and there was finally a reason behind everything we had been seeing. But that relief was quickly mixed with fear. After wanting an answer for so long, I suddenly became terrified of what that answer might mean for our little girl.

Then they told me the name: Pierpont syndrome. I had never heard those words before. I didn't know what it was, what it would mean for Lara's development or what her future might look like. We finally had the answer we had searched for, but it came with hundreds of new questions.

After the phone call, one of the first things we did was search for Pierpont syndrome. We had never heard the name before, and suddenly it was a part of our daughter's life.

We quickly learned just how rare it is. There wasn't a simple guide telling us what to expect, and there certainly wasn't a clear picture of what Lara's future would look like. Even today, very few people in the world have been diagnosed, which means there is still so much that isn't known.

Pierpont syndrome can affect development, growth, learning, communication and many other parts of everyday life, but every person is different. For us, understanding the diagnosis has never simply been about reading a list of symptoms. It has been about slowly learning what Pierpont syndrome means for Lara.

The diagnosis finally gave us an explanation, but it didn't give us a roadmap. That is something we have had to build ourselves, one step at a time.

Pierpont syndrome may be the name of Lara’s diagnosis, but it doesn't tell you who Lara is. It doesn't show you how hard she works for things that come naturally to other children, how much determination there is behind every new skill, or how much joy she brings into the smallest moments.

Lara experiences the world differently. Her development has followed its own path, and she needs significant support with communication, everyday activities and understanding the world around her. Things that may seem small from the outside can take an enormous amount of work, repetition and patience for her to learn.

There are difficult days, and there are challenges that affect almost every part of our everyday life. But there are also moments we once didn't know if we would ever see — new skills, new ways of communicating, another little step forward. Things that might seem ordinary to someone else can feel enormous to us.

We stopped measuring Lara's journey by where she “should” be. We learned to celebrate where she is, how far she has come, and every step she takes in her own time.

Getting Lara’s diagnosis did not mean that support suddenly appeared.

In many ways, it was the beginning of another fight — making sure she had access to the therapies, support and opportunities she needed.

Our days became filled with appointments, assessments, meetings and therapy. We have worked with physiotherapists, occupational therapists, special educators and other professionals, while Lara has received intensive early intervention and additional support in kindergarten.

But very little has simply been handed to us. We have had to ask, apply, explain and often fight for things that Lara genuinely needs.

Behind every new opportunity are phone calls, meetings, applications and countless conversations explaining why that support matters.

We continue searching for therapies and approaches that could help Lara communicate, develop new skills and become as independent as possible.

If there is something that could give Lara another opportunity to grow, we will keep fighting to give her that chance.

After everything you have read about diagnoses, therapies, appointments and challenges, we want you to meet the little girl behind all of it.

Lara is funny, curious, incredibly determined and full of personality. She loves being outside, listening to music, looking through books and exploring anything that catches her attention. She has a way of making the people around her laugh, and she brings an energy into our home that is completely her own.

Her days may look different from those of other children her age, and she still needs a great deal of help and support, but that isn't what we see when we look at her. We see our daughter — a little girl with her own interests, preferences, moods, sense of humour and a personality that becomes stronger every year.

There are so many things we once wondered whether Lara would ever be able to do that are now simply part of her life. And while we don't know exactly what the future will bring, we are excited to keep discovering who she is becoming.

Pierpont syndrome is part of Lara's story, but Lara will always be so much more than her diagnosis.

As her parents, we have spent years searching for answers, fighting for support and looking for every opportunity that might help Lara. And as we began looking further — at therapies, specialists and possibilities outside of what is available to us in Norway — we knew we needed to find a way to make more of those opportunities possible.

That is why we created LOTI KIDS.

This store gives us a way to work towards something incredibly important to our family: being able to say yes when an opportunity for Lara comes along. Yes to another therapy. Yes to travelling to see a specialist. Yes to trying something that could help her communicate, understand more, become more independent or simply make everyday life a little easier for her.

And that means every person who chooses to shop with us becomes a small part of Lara’s journey too.

Behind every order is a family packing it with gratitude, knowing that your support is helping us continue to invest in Lara’s future. You are helping us keep searching, keep trying and keep giving her opportunities we might otherwise have to walk away from.

We don’t know what Lara’s future will look like, or how far she will be able to go.

But with every order, you are helping us give her the chance to find out.

And from our family to yours — thank you for being part of her journey.