Welcome to my blog, feel free to follow my journey below.

Hi, I'm Shahn!

Hi, I’m Shahn. I’m 32 years old and based in the UK. I was diagnosed with Noonan Syndrome (NS) at birth, a condition that has shaped my life in many ways. Over the years, I’ve undergone numerous operations and faced many challenges. You can learn more about my experiences in the ‘Living with Noonan Syndrome: My Journey So Far’ and Blog sections of my website.

While Noonan Syndrome has undoubtedly presented challenges, it does not define who I am. I’ve always believed in overcoming obstacles, and I continue to embrace life with resilience and a positive outlook.

This website is a platform for me to share my personal story and raise awareness about Noonan Syndrome. Through my experiences, I hope to shed light on the medical conditions, physical challenges, and other battles that come with living with NS. My goal is to help others understand the condition better and provide support to those who face similar challenges.
Thank you for taking the time to read my story. I hope that, by sharing my journey, I can make a positive impact and encourage greater understanding of Noonan Syndrome.

Life Has Been… A Lot!

I’ve never been someone who sits and dwells on things. I’ve always been a “pick yourself up and get on with it” kind of girl. But this year? This year has been a lot.

Ben and I started the year by spending a few days in Shropshire to celebrate the New Year. We decided to kick off the 1st of January with a day trip to the beautiful Elan Valley in Wales. Unfortunately, within the first couple of days in Shropshire, I injured my knee while walking down The Wrekin. Despite the pain, I gritted my teeth and carried on so we could make the most of our trip. When I say it was agony, I’m really not exaggerating. Every step, every bend of my knee, and every bit of weight I put on it was incredibly painful.

Even so, we had an amazing time. We did plenty of walking, visited all of the dams in Elan Valley, and although one wasn’t flowing, the others were absolutely spectacular. We even stumbled across an open day where we were able to go underneath one of the dams and learn about its fascinating history.

Then came February.

On the 19th, I got home from work to find that our pet cockatiel of around 11 years had sadly passed away. It was heartbreaking. We’d already lost several pets over the last few years, including our fish and ducks, so it felt like yet another goodbye.

Just a few days later, Dad called to tell me that our beloved dog, Ollie, wasn’t doing very well. He’d started showing signs of old age over the last couple of years, but he was still such a happy dog who loved his walks, swimming, and being with us.

Sadly, by Monday, he’d deteriorated so much that Dad knew it was time.

Saying goodbye to your best friend is something you can never truly prepare for. Ollie had grown from a tiny fluffy puppy into this big, gentle bear of a dog. He was a Huskador (Husky/Labrador) with the biggest personality, and he was loved by everyone who met him.

This was one of the hardest days I’ve ever experienced. We lost my childhood dog when I was 17, but I’d forgotten just how painful that kind of loss could be. Seeing how heartbroken my dad was made it even harder. Ollie was his shadow. Wherever Dad went, Ollie followed. They were completely inseparable.

As time passed, the pain slowly became a little easier to carry, although you never truly stop missing them.

In March, we discovered a leak caused by repair work that had been carried out in February. It resulted in extensive damage to both our bathroom and kitchen. What should have been a straightforward repair turned into a three-month nightmare involving complaints, escalating to Stage 1 and Stage 2, dealing with the Ombudsman, and endless stress before everything was finally put right in July.

Then came the day that changed my life forever.

On 5th April, Ben and I got up early and headed to Northampton to watch BWS Banger Racing, something we’ve always enjoyed together. It should have been a day filled with sunshine, laughter, and entertainment.

Instead, it became the worst day of my life.

Just 20 minutes from the track, my phone rang.

“Shahn… I’ve just found your Dad. I’m so sorry… he’s passed away.”

In that single phone call, my heart shattered.

My Dad was an incredible man, and I was absolutely a Daddy’s girl. In his eyes, I could never do any wrong. He always knew exactly what to say and always gave the best advice, no matter the situation.

Growing up, Mum, Dad, and I were an incredibly close family. Even after they separated in more recent years, they both remained my biggest supporters. They’re the reason I’ve become the strong person I am today and the reason I’ve always tackled my health challenges head-on. They never wanted me to be treated differently because of my health. To them, I was no different from anyone else, and that’s a lesson I’ve carried with me throughout my life.

Losing Dad completely broke me.

The only small comfort I take is knowing that he didn’t suffer. His cause of death was an aortic aneurysm, secondary to heart failure caused by high blood pressure. I find comfort in imagining that Ollie was calling him home, and now they’re back together again.

Mum and I arranged the funeral and wake ourselves. Until you’re in that position, you never realise just how much there is to organise. It was emotionally exhausting, but Dad had the most beautiful send-off. So many people came to pay their respects, and hearing everyone share stories about him reminded us just how loved he was. So many people told us how beautiful the service was, and I truly hope we made him proud.

There are so many treasured memories I’ll always have of Dad, and of Mum, Dad, and me as a family. From fishing trips and holidays in the caravan to countless adventures while in Cornwall, those are the moments I’ll cherish forever. They remind me not only of the wonderful times we shared but also of just how lucky I was to have such amazing parents.

Just as life seemed impossible to process, another loss followed.

In the middle of June, one of my oldest friend’s dads sadly passed away. Growing up, he was always so kind and generous. He’d often pick me up to take me fishing, and whenever I needed help, he was always there. Losing someone who had been such a big part of my childhood brought yet another wave of sadness.

Looking back over the last few months, it’s hard to believe everything that’s happened.

Through it all, I honestly don’t know where I’d be without my mum, Ben, my close family, and my best friend. Their love, support, and patience have carried me through the hardest period of my life, and I’ll never be able to thank them enough.

Strangely, after everything that’s happened this year, all of my health complications feel insignificant in comparison. Life has a way of putting things into perspective.

I’m not sure what the rest of this year has in store, but one thing I do know is that I’ll keep putting one foot in front of the other. That’s what Dad always taught me to do.

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