A post from one of our members Tony Boneyboy so poignant we have to share it in its entirety.

"So why do you do your costuming thing..?"

Myself [Tony] and the 501st UK Garrison first met Samuel back in 2019 at Invasion Colchester, when we were asked to present to him on behalf of the Rays Of Sunshine charity, a ‘granted wish’ of a trip to Orlando. A bright and bubbly 5 year old boy, with an infectious smile and full of beans… but things have sadly changed over the past 2 years.

Back in 2014 during a routine 22 week scan at their local hospital, the Doctors discovered a shadow on baby Samuel’s heart, and his mother Vicki was referred to GOSH (Great Ormond Street Hospital) in London for further scans. Baby Samuel, still in the womb, was diagnosed with a series of life-threatening heart conditions: a hole in the heart, narrowing of a valve, a murmur, defects in the right ventricle, and an underdeveloped right side. He had a Ventricular Septal Defect, Pulmonary Stenosis, Hypoplastic Right Heart Syndrome and Hypoventricula Left Heart Syndrome.

His parents Ricky and Vicki were told that he may not survive birth… and if he did, it might only be for 20 minutes or so. If he was strong enough to live through the birth and survive those first crucial minutes, he would have to have prompt open heart surgery, but the operation needed came with no guarantees.

The Doctor gave his parents two options. The first one was to give birth naturally and give him a chance of life, but risk severe complications. The second was to terminate the birth.

Extremely upset, confused and unsure about what they should do, they spoke to specialists for advice and support to decide what the best option would be for baby Samuel. They made the decision that they wanted to give him a chance of life, and in the early hours on a Wednesday morning in April 2014 at UCLH, weighing 6lb 14oz baby Samuel was born…. and survived those crucial first 20 minutes of life.

His first home was in intensive care with only medicine and machines keeping him alive, and then at just 6 days old, he underwent his first open-heart surgery. This operation meant he’d be able to get more blood to his lungs. So far he had defied all the odds to get this far - they called him a GOSH miracle baby!

His second open-heart surgery was at four months old.

More complex surgery at two years old, and at the time he had surpassed Doctors expectations, and managed to start school, having made it to year three.

Now 7 ¾ years old, a bright and beautiful, and incredibly happy boy, approaching his 8th birthday, the heart-breaking news that no parent wants to hear has been dropped on them.

On 22nd September 2021, during a regular check-up at Great Ormond Street Hospital, the consultant explained that Samuels heart and valves have a lot of scarring and tissue damage… followed by the devastating news that Samuel might not make it to his 10th birthday, and that the family should enjoy every moment they have together over the next 2 years, making as many memories together as they possibly can.

To help get him to ten years old, the family have been advised to try as best as possible to keep Samuel calm and not overexert himself or make him out of breath. Try doing that with a seven-year-old boy that loves to play with his friends, be outdoors, and do all the ‘normal’ things young boys like to do.

As you can imagine his parents have the almighty task of not only dealing with this news, but trying to keep him calm and keep his heart working at a steady rate as much as they can, whilst trying to balance this with having a normal a life as possible.
As a family, Vicki, Ricky and elder sister Daisy are fully aware of what is happening… and sadly what’s to come. Samuel and his little sister Betsy, whilst they are fully aware he is ‘poorly’ and things aren’t going well, they are not so aware of the situation, which might be a blessing in disguise.

In Samuels words…

”I have made a wish list of things that I would love to do, including creating lasting memories for my family. I’m fundraising to make my wishes come true, and I ask you kindly, from the bottom of our hearts, for you to help us achieve our fundraising goals. Now that you know my story, I hope you'll be there to enjoy memories and help support us to raise funds to make them happen. 
https://gofund.me/a7e44c74
Lots of love,
Samuel x”

Having remained in contact with his parents, Vicki his mother mentioned to me that they were coming up to London to the MCM ComicCon, the first MCM event in London for almost 2 years, and that they would love it if we could catch up.
The 501st UK Garrison stepped up, and along with our friends at Silver Sabres Combat Academy, Samuel along with Betsy and Daisy were made welcome and took part in light sabre training.. with Samuel being knighted by Lord Vader, before having an exclusive duel and photos with him.

Samuel was then given a Silver Sabres ‘Guard of Honour’ to the 501st UK Garrison Stage Talk, where unbeknownst to the audience, whilst our CO Gary Hailes was giving a talk about our different screen accurate costumes, and when referring the ‘Darth Vader’ costume… on walked Samuel to cheers and applause.…followed shortly by the other Darth Vader.

Photo shoots on the UKG stand with lots of characters, followed by a bit of quiet time and a chance for us to talk, and another memory has been made for Samuel and the family.
I would like to take this opportunity to thank.

Stephanie, Gary and Wayne and all my fellow 501st UKG members, along with Faisal and Jon and their people at Silver Sabres for making the whole family welcome and creating a wonderful experience for them, and especially our Lord Vader Cris Rogers for his time and interaction with Samuel.

This is why we do what we do.

Putting smiles on faces, making memories.