‘He was just my absolute world’
Mum’s heartbreaking story as courageous son loses battle with Huntington’s Disease
Acourageous young man who bravely fought Huntington’s Disease has been remembered for the inspirational way he embraced life and lived it to the full.
Dean Major was just 27 when he sadly lost his battle with Huntington’s Disease last month.
The hereditary condition stops parts of the brain working properly over time.
Dean, from Washington, started experiencing symptoms from the age of 17 and tested positive for the disease gene two years later, having had a 50-50 chance of inheriting it from his dad.
He decided to get tested after being rejected by the army when they learnt there was a chance he could have the condition.
Having harboured a lifelong dream to join the army, the news was devastating for Dean, who was officially diagnosed with Huntington’s Disease aged 21.
Mum Shelli shared Dean’s story on Facebook in an attempt to reach star Ed Sheeran and comedian Russell Howard in November, 2017, and the pair were overwhelmed when the appeal went viral and they were invited to meet Russell Howard on his show.
Sheeran even sent a personal video message to Dean, sending him ‘all the love in the world’ while he was on tour in Kuala Lumpur.
The inspirational young man proved he was a fighter in more ways than one by bravely battling the condition until he died on July 21.
Mum Shelli Major, 47, said: “He would have been a brilliant soldier whatever he did in the army.
"He was a soldier in life and fought more battles than he would have done on the front line. He never gave up.
"He didn’t bow down to it and fought as long as he possibly could.”
Shelli cared for her son at home with support from St Benedict’s Hospice in Dean’s final years.
She described how the condition took everything away from her son, with Dean’s speech and mobility being affected.
Dean also suffered from involuntary movements and the mental effects of living with the condition.
He relied on daily medication and had to be peg fed due to the risk of choking as his swallowing was affected.
But despite all he had to endure, Dean remained true to himself and was known for his colourful dress sense and kindness to others.
He made and completed a bucket list of things he wanted to achieve, which saw him cover himself in tattoos and take on adrenaline activities including a parachute jump, triple bungee jump and paragliding.
Even when he was in a wheelchair, Dean managed to complete a zipwire from the Baltic to the Sage in Newcastle to raise funds for the Percy Hedley Foundation.
"When he was diagnosed, he hammered the gym and built himself up as he had got into MMA and one of the things he wanted to do was compete and win a professional fight, which he did,” mum Shelli said.
“Even when he could barely walk he wanted to do the charity zip wire to help other people and he was buzzing when he had raised the money.
"He also drove an army tank and loved it – he had no fear.
"He just inspired so many people.
“He was really outgoing and everybody loved him.”
Dean and mum Shelli were very close, with Shelli finding comfort from her poetry, something which her son was very proud of.
“He was my absolute world,” she said.
"He was a lovely lad and kind despite what was going through.
"I write poems about everything and he was always saying they were amazing.
“He was a proper man’s man but we were very close.”
Mum Shelli is now hoping to raise awareness of Huntington’s Disease and tackle the misconceptions around its effects.
She said: “I want people to be aware of the condition and not to judge someone who has involuntary movements thinking they must be on drugs or drink because that happened to Dean so many times.
"Try and educate yourself. If you don’t know about it, just Google it."
Dean’s funeral service was held at Saltwell Crematorium on Friday, July 31, and saw many people wear bright colours in tribute as they paid their respects to the man who ‘inspired so many.’
The following is a poem written by Shelli about Dean:
Over and over I ask myself how can this be real. How can I still be breathing, through the sorrow that I feel. Over and over I tell myself, your pain and suffering is gone. I bare this pain for you son, now you and peace are one. Over and over I ask myself, why they simply did not see. They knew this day was coming, yet still they chose to be free. Over and over I tell myself your mind and body are now at ease. Free from all the battles, that you fought through that disease. Over and over I press play and pause, on the memories that we shared. Taking comfort that you were cherished, by those who really cared. Over and over my body aches, to hold you close again. I can’t belief that you’re not here, but I know you face no more pain. Over and over let me search, for words I cannot find. You’re living on through me son, in my heart, my soul and my mind. My Little Hercules. Dean’s Ma (always and forever).