Kieran, Barnaby, Alfie, Mathilda and their amazing friends in Year 5 are going to walk and run 100km each during the month of February in order to raise much needed funds for two important causes: Breathing Spaces @ GOSH, a program inspired by Rory, Barnaby‘s brother and Harry‘s Giant Pledge a fund set up in memory of Harry, Alfie’s cousin.

The children were inspired by some of the mothers who will be undertaking a phenomenal 100km in 24 hours in May 2021.

Lockdown has been hard for these 9 and 10 year olds, being out of school, not seeing their friends, and they wanted to use their determination, positivitiy and kindness to make an impactful change in memory of Rory and Harry.

Thank you all for your donations,

Kieran, Alfie, Barnaby, Mathilda, Henry, Noah, Charlie R, Murray, Milo, Ethan W, Lucas C, Charlie H, Alexander, Josh, Harry, Louisa, Autumn, Florence B, Martha, Max, Clemmie, Amalia, Jessie, Grace, Alana, Libby, Emily, Florence A, Rocco, Leo, Jack, Ollie, Priya, Minnie, Maisie, Willow, Ethan M, Freddie, Tom and Daniel.

BREATHING SPACES @ GOSH

Breathing Spaces are parent/carer rooms in hospitals which create a ‘home from home‘ environment. These spaces are thoughtfully designed to meet the specific needs, and promote the wellbeing, of parents/carers in this challenging situation. Breathing Spaces were inspired by Rory and his family and these rooms now exist in children’s hospitals across the UK (funded by The True Colours Trust). Lisa and Mike are now raising money to create 3 new Breathing Spaces at Great Ormond Street Hospital where Rory spent much of his life.

Find out more from Lisa and Mike:

Rory was diagnosed with athymic complete DiGeorge syndrome in October 2013, which essentially means that he was born without a functioning immune system. As a result, we spent the best part of 3 years in and out of hospital, which included many long and difficult stays. Having a seriously ill child in hospital is one of the most stressful experiences a parent can go through. All of us respond in different ways to the pressures of hospital life but most of us at some point feel lonely, frightened and far away from home and the support of our friends and family.

We spent the majority of our time with Rory in his room, day and night, which involved complicated rotas to ensure he was never left alone, that we both saw our other sons and that Mike could continue to work full time. Sometimes, we just needed a break like when Rory went to the operating theatre, we didn’t want to wait by an empty bed but we were too nervous to leave the hospital. We had to have many difficult conversations with the medical staff and afterwards we needed to talk (or cry) and not in front of Rory. Rory was on TPN for the majority of his life which meant he was fed intravenously and as a result we never felt that comfortable eating in front of him and sometimes we just wanted to connect with someone else who knew what we were going through – other parents.

Unfortunately, sitting rooms/kitchens for parents or carers in hospitals are often given very little thought – it is the child who is sick after all. This is true of course, but we as parents play a vital role in our child’s care team so this needs to be seriously re-evaluated. If we look after the parents, then they are better fuelled physically and emotionally to look after their child so everyone benefits.

Mike and I are determined to do what we can to make families’ experiences in hospital more bearable, to help parents develop friendships, share their experiences and give them the space they deserve.

Lisa and Mike

HARRY’S GIANT PLEDGE

Harry Shaw was diagnosed with Ewing's Sarcoma, a rare bone cancer, on 2 August 2018 when a routine scan on a small lump showed a tumour the size of a large baked potato inside Harry's right chest. Harry was 4.

In the space of a few minutes on that hot sunny afternoon the Shaw Family's life was changed forever.

Initially, Harry charged through chemotherapy and several operations to remove tumours. He was largely unfazed by the loss of his hair and his determination to get better was truly admirable, but it became increasingly clear that they were up against the odds. Results started to go against them and eventually they were forced to accept that Harry would die.

On 1 June 2019, five-year-old Harry took his last breath after a tough 10 month battle.

Harry’s parents, Charlotte and James, set up Harry’s Giant Pledge to raise money for The Royal Marsden Cancer Charity to try and ensure other little Harrys don't go through the same thing, but rather beat this awful disease and give future children and their families hope.

Harry's Giant Pledge will fund pioneering research into a new treatment approach for children with sarcoma cancers. The aim is to test cancer drugs that have been successfully trialled in adults so they can be used in paediatric treatment. The research will combine these drugs with radiotherapy for the first time to make the treatment more effective. Harry’s legacy will fund a research team to test this new treatment and help the Harrys of the future.

One of Harry’s favourite expressions during chemotherapy was: ‘Let’s just get it done’. James and Charlotte have raised a phenomenal amount of money already but there is still significant funds to be raised to get this project off the ground. In honour of Harry ‘let’s just get it done’ spirit let's raise some money and help Harry build this inspirational legacy.