‘Wonderful’ Zach Keay died suddenly on December 8 and his ‘deprived’ family – mum Caroline, dad Vince, sister Freya and brother Matthew – are still awaiting answers about his death.
Caroline, 41, said: “He made his family the proudest person on the planet, we had the honor of being his parents and we will ensure his memory and his legacy lives on.”
In memory of little Zach, the devastated Keays are raising as much money as possible for the Portsmouth Down Syndrome Association, asking supporters to donate money to a JustGiving page rather than giving flowers or gifts.
Zach was born with Down syndrome, and the family say it ‘made him who he was’ – and meant they were ‘introduced into a wonderful community of people’.
Caroline, who lives with her family in Swanmore, said: ‘Down’s Syndrome has made her life better. He was so loving, he understood everything.
Vince, 41, said: “He was very empathetic – I think that gave him a better understanding of emotions. He would see you were sad and give you a smile and a hug.
“For him, Down syndrome was his superpower. It made him such a beautiful little person to be around.
“We really thought he was going to change the world.”
The bereaved daughter pays tribute to her “playful”, “hardworking” and “caring” father,…
PDSA is a charity that supports young people with Down syndrome and their families, providing specialist services and helping with development and education.
Caroline, who works at Hampshire County Council, said: ‘We joined PDSA about a year ago.
“It is an exceptional charity that helps support members of this community, enabling them to grow, develop and lead fulfilling lives.”
She explained that the charity offers speech, language and numeracy sessions for preschoolers, and that if Zach had gone to school, the charity would have continued to support him in his education. .
“With these groups, they accompany the children to give them the best start,” added Caroline.
“PDSA has helped Zach grow and develop.”
Funds raised for the charity will help it continue its work to improve the lives of people like Zach.
Vince, who works for Checkatrade, said: “We really wanted to do something to help this community.”
PDSA has decided that funds donated by the Keays will be directed to a special facility at the charity’s base, the Sarah Duffen Center in Belmont Street.
Rachael Ross MBE, Chair of PDSA, said: “We are all devastated by the loss of beautiful Zach. It was just such a shock.
“We donate for a sensory room that will help other children with Down syndrome.”
Zach also suffered from Hirschsprung’s disease, which meant he needed a stoma and major surgery when he was just one and a half years old – but that didn’t stop him from “get his life back,” his mother said.
Caroline added: “None of these operations set him back, and once his stoma was reversed he gained confidence.”
Zach – who would have turned three this week – used Makaton sign language to talk to people and was well known for his “cheeky” smile.
Caroline said: “Everyone commented on how cheeky he was – a real little character who knew if he smiled at you he’d get away with anything.
“He rarely got in trouble because he was quite cute and charming.”
Vince agreed, adding: “He charmed everyone he met, from family to nursery – he was one happy little chappy.”
“He loved animals – he would see a dog and sign the word ‘dog’ and walk off in the opposite direction. He loved watching the giraffes at Marwell Zoo.
A huge music fan, Zach loved The Wiggles show and Mr Tumble’s Something Special, and also attended Moo Music sessions for children.
“Every time he saw his Moo Music t-shirt he would smile and start dancing – he loved joining in on all the different songs,” Caroline said.
“Any instrument we have at home, he would buy it and play it. He learned very quickly.
The family don’t know what caused beloved Zach’s death – which doesn’t appear to be related to his conditions – and are awaiting the results of an autopsy.
His parents took him to the hospital after he became lethargic, and he was kept in the high-dependency unit.
Vince said: “Unfortunately around 5am the nurses were doing some tests – apparently he was playing with the nurses, laughing and laughing – and his heart just stopped.
“Obviously they worked tirelessly to get her heart going again, but they couldn’t.”
The funeral was on Friday and a wake was held at The Brickmakers, the Keays’ local pub.
Vince said: “We wanted the funeral to be a celebration of his life, his favorite songs being played. His sister wrote a poem.
Caroline added: “It was lovely – we were blown away by the number of people in the church.”
Freya, 10, and Matthew, eight, are now back in school.
“They are comforted by their friends, who have been amazing,” Caroline said.
Now the Keays are focusing their efforts on fundraising in Zach’s memory – and have already raised almost £3,000 for the sensory room.
Caroline said: “There is no target, but we have been overwhelmed with the amount that has been donated, the donations keep coming in.” People have been so generous.
“That’s great – if in Zach’s memory we can support other families, then that’s great.”
“We will ensure that his legacy continues.”
Vince added: “The more we collect, the more we can help people in the Down syndrome community to lead happy and fulfilling lives.”
CAROLINE and Vince Keay are keen to raise awareness about Down Syndrome and the work the Portsmouth Down Syndrome Association does for the community.
Vince said being Zach’s dad “really opened his eyes” and taught him a lot about what Down syndrome really is.
He added: ‘Zach was a huge, wonderful part of my life and always will be.
“The value of the life of a person with Down syndrome is as important as that of anyone else.
“We want to raise awareness about this – it’s a massively misunderstood set of symptoms.”
Caroline said: “Society needs to know and understand – Zach left a huge impact on everyone who met him, and the legacy of who he was is incredible.”
The couple highlighted the charity’s work in impacting widespread change as well as helping individuals, highlighting its work on the Down Syndrome Bill.
The PDSA worked with MP Liam Fox on a bill that, if successful, would lead to the establishment of a Down Syndrome Act and a national strategy to improve benefits and outcomes for all people living with Down syndrome in the UK.
This would include maternity care, education, health, social care and employment.