Samuel’s Story

Why did we start Samuel’s Charity?

At the start of September 2013 Samuel was admitted to St Georges hospital in South London. He was diagnosed with a cancer, one that is very rare – Precursor T-Cell Non-Hodgkins Lymphoma. This particular type had not been seen before. This meant the treatment for it wasn’t black and white, and there was trial and error in the type of treatment he got.

 

On Wednesday 22nd January 2014 Samuel lost his fight. He was 9 years old.

 

Many of you know what Chemotherapy does, but essentially it can have an impact on all major organs, joints, bones and eyes as well as mental and neurological function. Samuel had 3 bloodclots, his left lung collapsed twice and there was water in and around the left lung.This meant it was hard for him to breath and he had to do breathing exercises daily. He had a chest drain for the last month of his life which was extremely painful.

He got very tired very easily, joint pain from the Chemo, had to take a huge amount of medicine daily along with twice daily injections that were very painful, frequent blood transfusions, lumbar punctures and painful scans and procedures. His eyesight and hearing were affected too.

But throughout all of this he was an inspiration. He was still his old self – chatty and friendly (unless you brought medicine!). His courage and spirit touched everyone who met him and this helped us all daily.

What is even more amazing is that Samuel really wanted to help other kids and families in the same situation as him. He has such a big heart – he started by telling off the matron of ICU, where he had been twice, that the food for kids just wasn’t good enough (think school dinners 30 years ago with only one choice each mealtime).

He wanted the other kids to have a decent choice as a meal isn’t just a meal for them, it is one of the things that can bring a little pleasure in an often horrible and scary day.

So now the hospital is rolling out and completely re-vamped menu for the children along with staff dedicated to supporting and helping the kids with their meals. Fantastic! You’d think that’s enough. No.

Samuel started his charity to help really sick kids and their families get through what is most likely the worst time in their lives, to make their time more bearable and to bring some relief, fun and hope to their day. Samuel’s Charity helps any sick children, whether in hospital or not.

Through Samuel’s Charity Facebook Page we aimed to raise a few hundred pounds to help out the other kids. Samuel wanted to give them the chance to have a nice meal on when they felt up to eating.

People just kept donating and word spread through the Facebook Page. Now Samuel could really make a difference – his charity could improve the day to day life of many of the children and their families going through serious illnesses like Samuel.

We supply Smiles

What are we doing with the donations?

We help sick kids in hospital by supplying smiles. From replacing TVs, DVDs, games consoles, books, games, room decoration and sofa beds for parents to helping to transform the meals and supporting the staff with equipment and resources – we do anything that will make a difference to the kids while they are ill.

Two of the best items are the Accuveins and the Electric Cars.

The Accuveins are handheld scanners that show nurses and doctors where the veins are so injections and cannulas can be done first time, every time. This reduces the pain greatly and makes a huge difference, especially as finding veins in children, especially when they are sick, can be difficult.

The Electric Cars rock! One of the Sisters on the ward said she had seen them in another hospital so we bought two to trial. The kids loved them! The kids can sit in them and drive around the ward or drive themselves to theatre or x-ray. It makes a scary journey into an adventure. It is a brilliant way to put a smile on a child’s face, especially when a little fun playing is often rare in hospital.

TVs are the main way a really sick child can enjoy the day and take the focus off the pain and worry. So many kids are just too sick to play games or lego or read a book. His mum and I used to read to Samuel, he loved that too. The TVs will have built in DVD players and be able to stream Netflix, BBC IPlayer and the like.

A sofa bed doesn’t sound like much of a help, does it? Well, as a parent you are there to comfort your child but also you are often an unofficial part of the team looking after your child. It is so common to be up five or six times during the night with a very sick child, and this can go on for many months. It is really hard to then be able to function during the day on little sleep. The worst thing is to have a bed that is uncomfortable.  Plus, one of the best medicines available is a hug from your mum or dad and, if possible, sleeping with them instead of on a hospital bed.

Hospital wards themselves are very dull and depressingly ‘decorated’. Often they are painted grey and pea green – this is not a cheerful combination. We decorated the ward over christmas and are planning to have permanent wall and room decorations so there is a much more light and happy feel to the wards, not the depressing look at present.

An ice machine is needed so we will get one – it is a very specific type needed for hospitals. Ice helps with pain management as well as cooling drinks! The rooms get very hot and an ice machine will be invaluable through summer.

There are many smaller items like play equipment for the school and playrooms, coffee cups and teaspoons for the parents kitchen, WIFI and Netflix subscriptions – the list goes on and this is why we need your help right now.

I lost my son and I can never have that time again, but I promised Samuel I would keep his charity going, to help other families through such hard times, to make the time as good as it can be.