Beauty for ashes
19 September 2019
It’s been more than ten years since Alli and Liam Holland lost their son Elijah to a rare genetic disorder, MECP 2 Duplication Syndrome. They were still reeling from Elijah’s sudden death, when their second son Asher was diagnosed with the same rare condition, which results in physical and intellectual disabilities.
Today Alli and Liam work at Rouse Hill (NSW) Region Salvation Army, where they also worship as a family. And Asher, now in year six, attends The Ponds School for children with intellectual and physical disabilities.
Over recent years, the Holland family have made many trips to hospital with Asher, whose compromised immune system means the ever present threat of infection and septic shock.
While in hospital, they would often run into families from the school, which in turn led to many deep discussions about the unique struggles the families were facing. To begin to meet some of the urgent needs of local families, carers and others involved in the care of children with disabilities or complex medical needs, Alli and Liam together with Rouse Hill Region Salvation Army launched Project CSC, which stands for ‘Connect, Support and build Community’.
The project offers meals, family and carer support, financial assistance to help cover the cost of non-PBS medications, support groups, accessible events and outings for special needs children and their families, plus home and hospital visits.
Play dates called ‘Tribe Kids’ and a parent’s support group called ‘Tribe Parents,’ provide inclusive, sensory activities, with volunteers interacting with children so that parents can relax and share together.
“The sense of belonging is huge,” says Liam, with Alli adding, “Yes, because for so long you’re the rarity. In society, at a shopping centre, you know, you’re the one that people look at. Whereas, in the ‘tribe’ environment, you’re around people who just ‘get it’.”
The opportunities are endless, and the vision of Project CSC is a big one. “We dream of a community filled with hope where nobody has to do the journey alone,” says Liam.
Reflecting on their journey Alli and Liam say God has created ‘beauty for ashes’ (a reference to a Biblical quote from Isaiah 61:3, that reads in part ‘to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness’.)
“For me,” says Alli, “I don’t think God plans for things to happen from the start – like losing Elijah, like MECP2 Duplication Syndrome, but I do think God gave us specific gifts and passions (He doesn’t waste anything) and it’s that, combined with our life, our passions and talents, that project CSC was born out of.”