Zach Keay's family raising money for Portsmouth Down Syndrome Association after his death

Zach Keay, from Swanmore, died unexpectedly on December 8.

He had been diagnosed with Down Syndrome and Hirschsprung’s disease shortly after birth.

Now his family are raising money for Portsmouth Down Syndrome Association.

Mum Caroline said: “Zach would brighten the darkest of days, he was an absolute ray of sunshine and would always have a smile on his face.

“He loved his cuddles and kisses and just lived his life in the best possible way. His Down Syndrome was a wonderful part of who he was, it made him kind, empathetic and extra loving, but in general he was just like any other three-year-old.

“Zach made the world a better and happier place. He made people see ‘difference’ in a new light.

“He was confident in his own skin and had an amazing personality, who never let any ‘disadvantage’ or procedure define who he was. He made all that met him understand Down Syndrome better, and that it in no way is it a disability, but for Zach especially it is his superpower.”

Zach with his brother Matthew and sister Freya

Caroline, dad Vince, sister Freya, 10, and brother Matthew, eight, say they have been overwhelmed by the support they have received. They have now raised nearly £3,000.

Caroline said: “No parent should ever go through this awful nightmare but sadly we have, but one amazing thing that has come out of it is the wonderful fundraising that has been done in Zach’s memory. We have been astounded by the generosity of our friends and family and even those we don’t know have donated.”

Zach was born on January 20, 2019, with Caroline experiencing a normal pregnancy and natural birth with no complications, but Zach struggled at first to feed and became poorly in the first few days.

“We spent 10 days in neonatal where he got diagnosed with Down Syndrome and Hirschsprung’s disease,” she said.

“It was the Hirschsprung’s that worried us as we had never heard of it so had no idea on what to expect, we came under the care of Southampton hospital, who were fantastic.”

Zach had three major operations in his first two years and he had a stoma at five-months-old.

“He bounced back quickly after every operation and just got on with life. One of the defining characteristics of his life was that he dealt with any difficult times with optimism, joy and love,” said Caroline.

It was on Zach’s second birthday when the family contacted Portsmouth Down Syndrome Association (PDSA) for support. From the start the family say they were welcomed in.

Due to Covid, the family were not able to meet many people in person but were provided with twice monthly sessions to help prepare Zach for school.

Caroline said the support meant so much to them.

She said: “This is what PDSA do so well, they support people with Down Syndrome to enable them to lead fulfilling lives. Zach absolutely loved these sessions, he concentrated on what he was being asked to do and loved to cause happy chaos during the sessions.”

Zach Keay

Zach’s death has rocked the family and their community, with his funeral taking place on Friday, January 14.

However Caroline wants people to remember him for his ‘love of life.’

Caroline said: “This is what Zach is most remembered for - his pure cheekiness and love of life. As was said in his eulogy ‘He always had a smile on his face; a special little boy; he had a cheeky grin which told you he knew he was cute; he loved cuddles and hugs; he charmed all the nurses; he could get away with anything – and he knew it. I could never be cross with him.”

The family have said that Zach loved his food, music and animals. Caroline added: “He knew all the Makaton signs for different pets, farm and zoo animals and would happily sit and watch the chickens at manor farm or the giraffes for ages at Marwell Zoo. Whilst he didn’t say many words, he picked up Makaton really quickly and learnt new signs everyday - I had to do a course to catch up with him.”

To donate go to justgiving.com/fundraising/caroline-keay1.