‘Wonderful’ Zach Keay passed away suddenly on December 8, and is sorely missed by his ‘bereft’ family - mum Caroline, dad Vince, sister Freya, and brother Matthew - who are still waiting for answers about his death.
Caroline, 41, said: ‘He has made his family the proudest people on the earth, we had the honour of being his parents and we will ensure his memory and 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 wellwishers to donate cash to a JustGiving page rather than give flowers or gifts.
Zach was born with Down syndrome, and the family said this ‘made him who he was’ - and meant they were ‘introduced to a wonderful community of people’.
Caroline, who lives with her family in Swanmore, said: ‘Down syndrome made his life better. He was so loving, he understood everything.’
Vince, 41, said: ‘He was very empathetic - I think it made him understand emotions better. He’d see that you were sad and would give you a smile and cuddle.
‘For him, Down syndrome was his superpower. It made him such a lovely little person to be around.
‘We really thought he was going to change the world.’
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 people in this community, enabling them to grow, develop and lead fulfilling lives.’
She explained that the charity offers children of preschool age speech and language and numeracy sessions, and had Zach gone to school, the association would have continued to support him in his education.
‘With these groups, they support children to give them the best start’, Caroline added.
‘PDSA helped Zach grow and develop.’
Funds raised for the association will help it continue its work improving the lives of people like Zach.
Vince, who works for Checkatrade, said: ‘We really wanted to do something to help that community.’
PDSA has decided that the funds donated by the Keays will be put towards a special facility at the charity’s base, the Sarah Duffen Centre in Belmont Street.
Rachael Ross MBE, PDSA chair, said: ‘We’re all devastated by the loss of beautiful Zach. It was just such a shock.
‘We’re putting donations towards a sensory room that will help other children with Down syndrome.’
Zach also had Hirschsprung's disease, which meant he needed a stoma and a major operation when he was only a year and a half old - but this did not stop him from ‘getting on with life’, his mum said.
Caroline added: ‘None of those operations set him back, and once his stoma was reversed he gained confidence.’
Zach - who would have turned three this week - used the sign language Makaton to speak to people and was well known for his ‘cheeky’ smile.
Caroline said: ‘Everyone’s commented about how cheeky he was - a proper little character who knew that if he smiled at you he’d get away with anything.
‘He rarely got into trouble because he was quite cute and charming.’
Vince agreed, adding: ‘He charmed everyone he ever met, from family through to nursery - he was a happy little chappy.’
‘He loved animals - he’d see a dog and sign the word for ‘dog’ and walk off in the opposite direction towards it. He liked watching giraffes at Marwell Zoo.’
A big fan of music, Zach loved The Wiggles and Mr Tumble’s Something Special show, and also attended children’s Moo Music sessions.
‘Whenever he saw his Moo Music T-shirt, he’d smile and start dancing - he loved joining in with all the different songs,’ Caroline said.
‘Any instrument we have in the house he’d get and play. He learnt really quickly.’
The family do not know what caused much-loved Zach’s death - which is not believed to be linked to his conditions - and are waiting on the results of a post-mortem.
His parents took him to hospital after he became lethargic, and he was kept in the High Dependency Unit.
Vince said: ‘Sadly at about 5am the nurses were doing some tests - apparently he was playing with the nurses, laughing and giggling - and his heart just stopped.
‘Obviously they worked tirelessly to get his heart started again but they weren’t able to.’
The funeral took place 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 favourite songs played. His sister wrote a poem.’
Caroline added: ‘It was lovely - we were blown away by how many people were in the church.’
Freya, 10, and Matthew, eight, are now back at school.
‘They’re taking comfort from their friends, who have been amazing,’ said Caroline.
Now, the Keays are focusing their efforts on raising money in Zach’s memory - and have already collected nearly £3,000 for the sensory room.
Caroline said: ‘There’s no target but we’ve been bowled over by how much has been given, the donations just keep coming. People have been so generous.
‘It’s brilliant - if in Zach’s memory we can support other families, then that’s great.
‘We will be making sure his legacy moves on.’
Vince added: ‘The more that we raise, the more we can do helping people in the Down syndrome community have great, fulfilling lives.’
Visit justgiving.com/fundraising/caroline-keay1 to donate and to find out more.
CAROLINE and Vince Keay are keen to raise awareness of Down syndrome, and of the work the Portsmouth Down Syndrome Association does for the community.
Vince said that being Zach’s dad ‘really opened his eyes’ and taught him a lot about what Down syndrome really is.
He added: ‘Zach was a massive, wonderful part of my life and always will be.
‘The value of the life of someone with Down syndrome is as much as anyone else.
‘We want to raise awareness of that - it’s a massively misunderstood set of symptoms.’
Caroline said: ‘Society needs to know and understand - Zach has left a massive impact on everybody who met him, and the legacy of who he was is amazing.’
The couple highlighted the association’s work to impact widespread change as well as helping individuals, pointing to its work on the Down Syndrome Bill.
PDSA has been working with MP Liam Fox on a bill which, if successful, would lead to the establishment of a Down Syndrome Act and a national strategy to improve provision and outcomes for all those living with Down syndrome in the UK.
It would include maternity care, education, health, social care and employment.