The 32-year-old was diagnosed with Partial Trisomy 13 (Patau’s syndrome) when he was a baby, and his odds of survival were unknown.
The genetic condition meant he has an additional copy of chromosome 13 in some or all of the body’s cells.
Despite this, Perry said his son has formed an interesting personality with a love for people watching, nature and arts and crafts and music.
“Right from the time he was born, we were told at 3 weeks old, take him home and enjoy what time you have got, and 32 years later, he is still here.
“He loves watching people, and he loves contact with people.”
In January 2024, Sean’s health took a turn for the worse, and he went from being able to walk and hold a conversation to needing a wheelchair and 24-hour care at Mt Herbert House, which he will soon move from.
“It was like he had a stroke without any evidence of a stroke.
“To a certain extent, he knows what’s going on and he’s got his own personality and he has kept that, which is brilliant and we have tried to keep it for him as much as you can.”
Ryde said it was a no-brainer to dedicate this year’s event to raising funds for Sean.
She said their goal this weekend was to have someone on the track at all times.
“A lot of the fundraisers are to do with the big charities and to do with the treatment side of things and it can get quite serious and intense.
“I think I just wanted to bring a bit of joy and want people to have fun … but also raise the money and bring light at the same time.”
Perry, an avid runner who planned to take part, said he would be taking Sean along with him on the run.
“I’m going to get him down for a couple of hours in the morning and I’ve arranged to borrow a running buggy … I will take him up and down the track for a couple of hours in the afternoon.”
Perry said the money would help with his quality of life.
“That might mean he can watch his DVDs, he can sit with a group and watch a movie, he can have people contact.”
Ryde hoped they would raise about $2000, with $990 already raised through Givealittle.
Michaela Gower joined Hawke’s Bay Today in 2023 and is based out of the Hastings newsroom. She covers Dannevirke and Hawke’s Bay news and loves sharing stories about farming and rural communities.
