In memory of Oliver Baskaran and Jamie Baskaran. My two brothers. My best friends.

In December 2018, I lost my brother, Ollie, aged 26. In June 2023 it then happened all over again when I lost Jamie, aged 32.

So what happened?

Duchenne Muscular Dystrophy… that’s what happened.

On 10th June 1991, Jamie Baskaran was welcomed into the world as an innocent, adorable baby. On 27th October 1992, along came his Brother, Ollie.

The first few years of their lives were normal. They laughed, they crawled, they had tantrums and they took their first steps.

When they got to the age of about 3 and 4, things didn’t seem right. They would get tired very quickly. They kept falling over. When trying to get back up, they would use their hands, and shuffle them up the length of their legs just to get back to their feet.

My Mum and Dad knew something wasn’t normal, so they went to doctors appointment after doctors appointment, just to be told ‘your boys are lazy’.

As the symptoms progressed over the next few months, my parents were pushing for a diagnosis. The doctors decided to take a biopsy of some muscle tissue of both Jamie and Ollie.

Then came the shotgun to the chest moment…. My Mum and Dad were told ‘Both of your boys have Duchenne Muscular Dystrophy and won’t live past their 20’s’.

Imagine the feeling… you’ve brought two gorgeous, cute, handsome little boys into this world, to be told you’re going to out live them.

As a family, we were on a mission to ensure that whilst they were still able to walk and have some level of mobility, that they deserve to experience anything and everything they wanted.

So over the next few years, off we went.. 3 holidays to Florida, jumping on an off of every roller coaster you could name. Trips to Spain every school holiday. Weekend getaway’s to holiday camps here in the UK and Football matches.

My dad was working two jobs and my mum was studying a degree. So most of this was funded on credit cards and loans. This spiralled the household into debt which is probably still being paid off today…. Would we do it again if we were to go back in time? Absolutely YES.

By the age of 11 and 12, both boys just didn’t have the strength anymore to be able to walk. They were now confined to a wheelchair.

With full mobility still in their arms, Ollie learned to play piano, and not just at a novice level. He learned to play music by ear! Any song you played to him, he could repeat it on the piano like he’d been playing it for years. Jamie mastered the art of online gaming and had one of the highest ranking Xbox gamer scores in the UK for a very long time! They had fun. They enjoyed the things they liked. Until….

A few years later, they got robbed of that. The things they enjoyed doing were stolen from them because of a condition they had.

They grew weaker and weaker over the years.

By their early 20’s, their muscles were so weak, they couldn’t lift a glass to their mouth for a sip of water.

Bed bound.

For all of their 20’s, everything they did, whether that be eating, drinking, turning a light off, texting a friend, going to the toilet or simply wanting their pillow in a more comfortable position, all had to be done by a carer. They became reliant on other people doing the simple things in life for them.

Being fully compos mentis, and intelligent beyond belief, their life was now full of frustration. In their mind, they knew exactly how to physically do something, but their body just wouldn’t let them. They were trapped.

As the condition progressed, their muscles in their diaphragm became weak. They no longer had the strength to inflate their own lungs. This meant they were on a permanent non invasive ventilator for the rest of their days. They had to live knowing that the choice to breathe on their own had even been taken away.

Through all of this, they were still the most loving, caring, compassionate people anyone could meet. They were still positive about life, and were genuinely proud and excited for other people that were having children, going on holiday, getting a job, getting married or getting that pay rise. All of the opportunities that they had stolen from them, they were happy to see other people experiencing.

On 21st December 2018, Ollie (aged 26) suffered a cardiac arrest at his home. We went to the hospital where he was being kept alive by machines in ICU. The machines only managed a few hours before we ultimately lost him. We had to say goodbye.

Jamie then had to live for the remaining 5 years knowing what his fate was, as he had seen it happen to his younger brother.

How he managed the next 5 years is a story that needs a book and can’t be articulated on a page like this. But he did. He got to meet his nephew, and what a great uncle he was, and still is in spirit.

On 22nd July 2023, 9 months ago from me writing this, we got a phone call from a paramedic saying Jamie (aged 32) is about to take his last breath. We had to say goodbye.

I saw both of my brothers after their passing, as they laid there, not needing help, not needing a breathing machine and not needing someone to help them go to the toilet. All of a sudden, they didn’t need anyone to help them with anything. They were no longer reliant on others to complete simple day to day tasks that we all take for granted.

As a family, our hearts are broken and our lives have been torn apart. But…. They no longer live a life of struggle, frustration and pain.

I am running the marathon in 2025 because my legs work, and theirs didn’t.

Duchenne muscular dystrophy (DMD) is a genetic condition that only affects males. There is currently no cure. Muscular Dystrophy UK lead the way with fundraising for research on a cure for the condition, so no boy ever has to have it again, and no families are torn apart by it.

Please help me raise funds for this charity which is clearly very close to my heart.

Konnor

Jamie and Ollie, I miss you very much <3