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Community rallies around Nicholsville toddler in need of $4,000 stander

Nick Jones and Kaylee Parsons of Nicholsville play with their one-year-old daughter, Sophie Jones, during a benefit held for the family in Burlington Oct. 21. Sophie was born with a rare genetic condition that results in a lack of muscle tone.
Nick Jones and Kaylee Parsons of Nicholsville play with their one-year-old daughter, Sophie Jones, during a benefit held for the family in Burlington Oct. 21. Sophie was born with a rare genetic condition that results in a lack of muscle tone.

'It feels like a dream'

BURLINGTON – People from near and far are standing in young Sophie Jones' corner as she strives to stand on her own.

The one-year-old Nicholsville girl was born with an extremely rare genetic condition caused by a microdeletion on chromosome 19. In Sophie's case, the tiny piece of missing chromosome has resulted in a lack of muscle tone.

Her parents, Kaylee Parsons and Nick Jones, have been told the condition is so rare that their daughter may be the only known case in Canada.

But there's hope for Sophie, thanks in large part to the generosity of people throughout Kings County and as far afield as Alberta.

Sophie's great-grandmother, Eleanor Benjamin, turned to Burlington Community Club president Brian Hirtle for help after learning that Sophie's quality of life would improve drastically with the use of a $4,000 custom-built stander that would allow her to be in an upright position.

“Eleanor is the kind of person that has never asked for anything, and always is there for everyone else,” said Hirtle.

“Her ask did not go unnoticed.”

Hirtle said the response to Benjamin's call for help was nothing short of heartwarming. Within 24 hours, the Aylesford & District Lions Club provided the young family with a cheque to cover the $2,000 down payment required for the IWK Health Centre to start building the stander. And the community vowed to come up with the rest.

The Burlington Hall was packed the morning of Oct. 21 for a freewill offering breakfast planned for Sophie. Several businesses donated food for the event, and community volunteers awoke bright and early to staff the event.

“It's not just one community, it's the entire Valley,” said Nick Jones.

“It's hard to find the words to thank everybody.”

Any extra money raised beyond what they need to purchase the stander will be put into a trust fund for Sophie's long-term care.

Parsons can hardly believe how many people have taken an interest in Sophie's health since learning of her rare condition.

“It feels like a dream,” she said, looking at the crowd gathered in the packed Burlington Hall for Sophie's breakfast.

“She needs it now to progress the way she should, to give her the best head start that we can. The support has been great. They've gone above and beyond getting the stander,” Jones adds.

The stander is designed to last until Sophie is five, and assist with mobility, peer-to-peer contact, respiratory development and digestion – to list a few things. Both parents are proud of how determined little Sophie is to keep trying new things.

“It's already insane how much she's come along,” said Parsons, noting that Sophie learns a lot from interacting with other children on a regular basis.

“She's very happy-go-lucky.”

 

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