A Leeds mum has spoken out about her shock and devastation after the death of her five-year-old son just two weeks after he was diagnosed with a rare condition.
Zac Saunders was born in 2011 to Mary Holmes, who lived in Garforth at the time. Zac, nicknamed Z-Man, was born with several complex needs and disabilities, which Mary said could be best described as akin to Cerebral Palsy.
Though they knew his needs were complex, Mary and her family were left shocked and heartbroken when Zac tragically died just a month after his fifth birthday in 2016. In the years since, Mary has put her efforts into fundraising for the charities that helped Zac and other bereaved parents.
Mary, now 33 and living in Allerton Bywater, told LeedsLive: "It was just such a massive shock and really traumatic because we didn't know he had this life-threatening condition. We'd been having to fight for things for him his entire life.
"If someone had told me I would only five years with him and I would've spent that time making the most of it rather than fighting. I wouldn't have spent all our time worrying.
"He got a chest infection a month before he passed away. He got admitted to hospital and one of the tests they did found a kidney disease that hadn't been found before. Before the chest infection, we had been told he might not live until 20, and had had to get our heads around that - but we thought we had more time."
Zac was diagnosed with Focal Segmental Glomerulosclerosis (FSGS). This is a disease where scar tissue develops on the parts of the kidney that filter the blood to remove waste. It can eventually cause kidney failure and can only be treated by transplant.
Zac sadly died on August 28, 2016, at Martin House Children's Hospice. Mary later joined the Martin House support group for bereaved parents, which she said really helped.
"Zac was absolutely gorgeous," she said. "He had wild, curly, red, hair. He was so funny and would laugh at anything. He couldn't say words but you never cared because he was so happy all the time. I don't know how he coped with all the misery he had to go through and still was so happy.
"It was a complete joy to look after and spend time with him. He had a teacher at school who loved him so much who I still talk to. He lit up every room he was in. He loved rock music too."
Since 2018, Mary has been running a festival in Zac's honour in Garforth where he was born. Called Z-Fest, Mary gathers bands from across Leeds to play at local pub The Gascoigne (because of Zac's love of rock music) and raises money. In 2018 and 2019 they raised money for Martin House.
While at the bereaved parent's group, Mary met Emma Oliver, who tragically lost her son Daniel, 15, to suicide in 2017 as he struggled with GCSE stress. They became friends, and Mary decided she wanted to support Emma's charity that supports children's mental health in honour of her son: Team Daniel.
Mary said: "Emma has been through so much and I don't know how she does it all. Her youth group is already really popular and they're planning to expand. It's a very important cause."
As a result, Mary decided this year Z-Fest donations would go to Team Daniel, which facilitates groups for young people to talk about their problems together and access support.
This year Z-Fest will be taking place on Saturday, July 16, at the Gascoigne in Garforth from 12pm until 11pm. Entry is free to hear the live music, and donations are encouraged.
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