I am running the furthest I have ever run for our beautiful baby boy Lennie Allen Coleman who sadly passed away in the Rainbow room in Neonatal Intensive Care Unit at Great Ormond Street on 13 March 2024.

Lennie was at GOSH for 2 weeks after being diagnosed with an extremely complex and rare heart condition at 20 weeks gestation. We were hoping Lennie would be treated in the cardiac department at GOSH when he was born but sadly because Lennie was an identical twin, Lisa went into pre term labour at 32+5 weeks and this complicated Lennie’s condition further. We had to make the extremely hard decision to go down the comfort care route with GOSH’s palliative care team and it was the hardest day of our lives.

GOSH were incredible throughout and we felt so well supported and understood. We want to give back to GOSH in memory of Lennie as much as we possibly can.

Lennie’s dad Matt’s tribute to Lennie that he read at Lennie’s funeral on 11 April 2024:

A few words for Lennie.

At the 20 week scan we found out one of our identical twins had a major heart condition.

This twin was named Lennie.

We were told that high risk surgery was possible, but with this condition you would usually have additional problems with the development of other organs whilst in the womb.

We were offered selective termination, which posed a 25% risk to his brother Ronnie, so we agreed that unless they found anything else wrong in the scans we would continue.

In my eyes this is where Lennie begins to show us his fight.

Every two weeks we were scanned by the best, yet they couldn't find anything else wrong. There were scares but nothing concrete. Every time they did additional tests to double check, the results always came back in Lennie's favour. It was Lennie telling us, come on we can do this, don't give up on me and protect Ronnie.

We listened.

Ronnie and Lennie were born 7 weeks early in less than ideal circumstances for what we knew they needed at birth. Yet they were born and cared for very well at Harlow hospital. We had maybe a minute together and then everyone was separated.

A few hours later me and Lennie were in an intensive care ambulance with blue lights flashing, navigating the London rush hour traffic.

We arrived at Great Ormond Street hospital, and to no surprise, he was still fighting.

That day he wasn't left alone, with tests, scans and pipes put in every place possible. I remember everyone telling me how well he was doing. Responding positively to every drug given to him.

He was fighting and there was hope.

A few days later the results of the tests came back, but this time not in Lennie's favour.

After meetings with the specialists it was clear other complications had come into play and what was already an extremely high risk situation became realistically impossible.

In my opinion, a parents job is to be there and protect your child at all costs. I've learnt that this comes in many different forms.

I like to think that Lennie achieved what he thought his job was, in protecting his brother, by reassuring me and Lisa in everyway possible, that everything would be ok, to believe in them both and not take any unnecessary risks.

You were very strong and showed fight all the way Lennie, but we also had to do our job as your parents and protect you, your heart, your spirit, your strength.

I will treasure the days sitting next to what I like to call "our" bed, while we tried to work out what this life really is all about. And even in one of the most darkest times of my life, you Lennie had some very good points to reassure me and hopefully everyone else here in this church today. Especially your mother and brother.

We decided it has to be about

- Belief

- Love

- Kindness

- Family

- Togetherness

- Hope

And then probably the most hardest thing of all sometimes....forgiveness.

Please always remember Lennie's values, and use them for yourselves if ever you need help, support, guidance or even if you’re just having a moment. He will always be there for you.

Lennie is named after my Grandfather.

The name Lennie represents Lion Strength.

You will always have bundles of that my son

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.