At the time of the diagnosis of both of Justin and Stefanie Boyce’s children, Jayden, age 5 and 2-year-old Brooklyn for the rare genetic disorder of San Filippo syndrome, the family’s friend and extended family members set up ongoing fundraising projects to met the needs of the children and their parents.
The rare progressive genetic metabolic disorder eventually affects the child’s motor skills and prevents him from walking. In the meantime, they need constant care and monitoring for their behavioral issues that are caused bye the disease. They can be destructive with anything they can get their hands on, including all items in the house that they can toss, break or otherwise destroy. Their behavioral problems only escalate with age, and they don’t live past their teens.
They are characterized by certain facial features that are recognizable as being a bit more heavy and full than children without the syndrome and their characteristic eyes and eyebrows.
Stefanie Boyce, Beach Park mother, said she can’t leave them unwatched for a moment while she goes and makes supper because they can take a quick toll on the living
room décor and all within their reach while unwatched.
The family recognizes the need to live in a home that is modified to the upcoming needs as the children grow and will eventually need wheel chairs. Currently their home, though lovely, is on two floors with the bedrooms upstairs, which won’t work when this wheel chair need becomes a reality. Besides other safety features necessary, their play area needs to be in view of the kitchen where Stefanie can make supper while being able to watch the children.
Various fundraisers have included garage sales with donations coming in from loving and concerned people all corners of the caring surrounding communities to help the Boyces raise the necessary money to build the perfect house for their circumstances. The house, to be built on a family lot where a family home and business already exists by which will provide child care can be shared when needed.
At the recent celebration for the foundation being dug, there was a chili cook-off with willing donors contribution chili to be tasted by the guests and voted upon with money. Each chili contribution had a jar in front, all of which collectively netted another $1,143 to be added to the already $100,000 already generated over the past two years.
“We would love to be in the house by spring, but we don’t know yet. We are going to try to get it framed so they can work inside through the winter, but we are just going to work until our money runs out, and then try to raise the rest,” Stefanie Boyce said Saturday.
In the meantime, the Boyces heartily thank efforts and support of Beach Bible where friends and family members attend, and their own church, Immanuel Church as well as all the other entities and wonderful donors and friends that have seen this goal through to this reality.
For more information and updates, visit their website: www.buildwiththeboyces.com/building
