Beneficiary Case Study: 11
Beneficiary Name: Jack & Jess
Muscle Dream Number: 151st
Jess, who continues his support of the Muscle Help Foundation (MHF) through various fundraising activities for which the charity is immensely grateful, agreed to share his family’s story and how its work made such a positive impact on both Jack’s life and that of his whole family.
|Recalling the first time they became aware of the charity and its work, Jess says:
“We came across the Muscle Help Foundation back in 2013. My wife was working, and still does, as a physiotherapist technician at a local special needs school. She spotted on one of the school’s notice boards the opportunity to apply for one of the charity’s Muscle Dreams. She bought home the information and I applied for our son Jack to have the opportunity to watch England v Ireland in the six nations rugby tournament. I could only use 150 words on the application which was a challenge!”
It wasn’t long before Michael McGrath MBE, the CEO of MHF contacted Jess to let him know that Jack’s nomination had been successful and so the scene was set.
“My first impression of Michael when we spoke on the phone was of someone who was extremely serious about every detail of our impending Muscle Dream experience. Every detail relating to Jack’s needs was covered. I felt immediately that this was going to be something very special for Jack and me. As you can imagine, Jack was ecstatic.
I played rugby for many years at a local level and continued to do so after Jack was born and after his diagnosis with Duchenne Muscular Dystrophy. Jack would come and watch me play on a Saturday with my wife. When I stopped playing, a few years after the birth of our daughter, I took up a season ticket at Gloucester Rugby Football Club, and the children and I used to go to frequently and my wife would often join us for the big games. Jack was in an electric wheelchair by then.
“My local rugby club which I was still involved with, helped fundraise for a an ‘all singing all dancing’ electric wheelchair for Jack. We called the fundraising initiative “Jack’s chariot”, and we held several events including a rugby tens tournament, which went on to run for many years raising thousands of pounds. In short, rugby has been a huge part of our family for years.”
The special experience that Jack was part of was the first Rugby Muscle Dream programme that MHF had delivered. It took place in February 2014 and its aim was to deliver a once-in-a-lifetime sporting experience around the England v Ireland RBS 6 Nations match at Twickenham.
|Talking about the Muscle Dream experience, Jess says:
“The day we arrived at the Twickenham Marriott Hotel at the rugby ground was so exciting for both of us; to be staying at the ground itself was awesome. We were treated like royalty from the start. There was a goody bag for Jack full of lovely gifts and a personal message on the TV screen for Jack. As I recall this, I feel myself becoming emotional, it was simply perfect.
“We joined the other parents and their sons for lunch and got to know everyone; Michael was so engaging, and there was such a positive vibe. The afternoon was spent shopping. Jack was gifted £50 to purchase a rugby hoody from the England memorabilia shop – we still have that hoody even though Jack is no longer with us. When I hold it the memories of our special trip all flood back.
“The first evening we were in a VIP box with a lovely meal and watched the England and Ireland veterans, which certainly whetted the appetite for what still lay ahead. The following morning, we had a huge breakfast served in our room, then went exploring the set up for the big day.
One of the highlights for Jack was having his picture taken with Greg Wallace from master chef and having a sip of his beer! The game itself was great and the whole experience was fantastic from start to finish. We met many players including Jason Leonard, Bill Beaumont, Andy Gomersall, Shane Byrne and Hugh Vyvyan to name but a few and there was also a visit from the Majorettes Allstarzz Sports Dance Team.”
Jess knew from that moment that MHF was a very special charity that he wanted to support. As a family they had been fundraising for many years for cures and treatments for MD, but as Jack got older and the possibility of treatments being available for him grew less and less, their focus switched towards the MHF and making wonderful memories for young people and their families through the delivery of more Muscle Dream experiences.
|Heartbreakingly, Jack passed away in 2015. Jess says:
“As a parent of a young man with Duchenne Muscular Dystrophy we went on a huge journey together. As a family we remain “us four” and Jack is with us always in spirit. We dream of him, we miss him, and we always try to speak of him in the present. We also find that as the years pass, it’s eight years now since Jack passed away, and we get older, we miss him more, the pain and sorrow is always there.
But that was our journey with Jack, and we lived life to the full and created many wonderful memories along the way, and yes, the dark cloud was always there with the reality that we’d lose him at a young age, but you can’t stay in that head space or you’ll miss what you could be enjoying in the present. Our way of dealing with it all was we all got on with it, and Jack was included in everything we did. What I always instilled in Jack was to focus on the things you can do, not the things you can’t!
That way of thinking worked for us and Jack – he was super intelligent, and his brain was his muscle! Since Jack’s passing, we have still been involved in fundraising events, such as doing sponsored walks with the former players association at Gloucester Rugby Club. We have also needed time to readjust our lives without Jack and focus on our daughter. She and Jack were so very close, and she has her whole life now without her brother by her side, but we remind her he is there in spirit.
This coming January 2024 will be Jack’s 30th birthday. Our daughter said we should have a party to celebrate his 30th in heaven! So, we are and have booked the local community centre hall, arranged a band and we are also going to fundraise during the evening to raise money for MHF.”
Since 2013, the family has remained supportive of the fantastic work MHF does; they have become firm friends with Michael and his wife. They believe MHF is extremely special, and although there is still a need to support research into treatments and hopefully a cure for DMD, they also firmly believe that young people living with MD deserve memorable experiences to share with their families, to get them out of their routines of caring, and the daily challenges that being disabled presents.
|Talking about the Muscle Dreams experiences, Jess adds:
“Those living with MD need magical, unforgettable experiences in their lives; moments in time that this charity delivers so well. If lads like my son Jack are only to have short lives, surely, we must try to fill them with outstanding experiences that not only uplift confidence and improve self-esteem but connect like-minded families – for they so deserve it.
“To see the smiles and relaxed faces of the charity’s beneficiaries is just a joy to see, and the positive inspiration that Michael is for the families is wonderful. So, for all people out there looking to support a small deserving charity, MHF is a perfect choice to support.
“Jack’s ‘Muscle Dream’ will live in me forever, as will the lasting memories I have of my dear son who my family and I miss so terribly.”
Contact the charity HERE should you have any further questions.