A miracle house for triplets with muscular dystrophy

The saying is it takes a community to raise a child. So what about raising triplets who each have a rare disability that means they are in wheelchairs and are fast growing out of their house?

r1441003_20866420The Read family of Canowindra, NSW on the block where they plan to build their Miracle House to cater for triplets with muscular dystrophy.

Eight years ago Jemimah Read was told she was having triplets, just eight weeks before she was due to give birth.
It was a shock for her and her husband Ben who live at Canowindra in central west New South Wales but they gladly welcomed Mahalah, Anwen and Gideon.

The couple also didn’t know they both carried the gene for merosin deficient muscular dystrophy which gave each of their triplets a one in four chance of having the disability.

At 18 months, all three of the triplets were diagnosed with the rare muscle weakness disorder and were in their first power wheelchairs at two year old.

Now the triplets are eight years old and attend the local primary school in their colour-coded power wheelchairs: pink for Mahalah, yellow for Anwen and blue for Gideon. But their small cottage was never meant for three growing people and while it’s been modified to a degree the Reads have decided they needed a purpose-built home.

The Miracle House

Two years ago the Reads decided that if they wanted their children to grow up like ‘normal kids’ they needed a wheelchair friendly house that would allow the triplets to eventually become independent.

“It’s more than more space. It’s a pretty unique thing to try and fit a house out to be wheelchair friendly,” explains Jemimah. “Even the height that things are at like the dishwasher or the washing machine. “To be able to get a wheel chair under a sink to teach them to wash up.”

They also need more space so that each child can have their own room that can accommodate their increasingly large wheelchairs and electric lift beds.

Ben and Jemimah’s is a long term vision that will take the triplets into adulthood and if they don’t stay living at the house, it could be a holiday home for other people with disabilities.

Part of the dream is stage two of the build which includes a hydrotherapy pool because swimming is the only exercise the triplets can do and their town doesn’t have an indoor pool.

The Reads have bought a five-acre block of land outside of Canowindra and the plans for what they’ve dubbed the Miracle House are now being finalised.

A financial leap of faith

However the Miracle House is going to cost hundreds of thousands of dollars. Ben and Jemimah have both had to give up work and the family survives on their carer’s payments. “It’s definitely a risk and a faith journey that we’ve taken,” says Jemimah.

They have some equity in their current home but they are quite limited with what they can borrow so the couple has decided to call on the community for help. “In the past we’ve been really blessed from a lot of support from people to get new wheelchairs and that sort of things so we just decided to do that again.”

Jemimah says they’ve already received ‘amazing’ support and the fundraising tally is now around $190,000 including an anonymous donation of $50,000 last week.

“Ben and I just looked at each other and were a bit quiet for a moment and just smiled at each other and thought, Wow!”

However the young mother says in some way she wasn’t surprised because the family has always felt looked after.

“In my experience everything has been provided as we go along.” “Ben and I are Christians and we really believe God’s helping us along the way.”

Fundraising snowballing

The fundraising effort started by Ben and Jemimah through a blog and Facebook page is now snowballing. A group in Canowindra has started a committee and obtained fundraising status. The group’s first aim is to get 100 people to do Sydney’s City to Surf fun-run with the aim of each raising about $500, via the everydayhero fundraising portal.

Committee member Anne Ward says her husband will be among the walkers despite having ankle fusion surgery a year ago. She says the committee would like to eventually raise enough to get stage two of the Miracle House (including the hydro pool) built sooner rather than later.

Jemimah says not being too keen on exercise herself she’s amazed that people want to walk or run 14 kilometres for her family and she’s very grateful. “I feel really, really blessed to live here. They [the townspeople] have helped us each step of the way with our kids.”

Anne Ward says the fundraising effort is evidence of the tight-knit and generous nature of a country town that has also suffered several tragedies in recent years.

But she says it wants support from beyond Canowindra.

“Any parent with healthy normal children would look at Jemimah and Ben and think my goodness three children in wheelchairs, how do they cope?”

For more information about the Miracle House and fundraising efforts: Raisingaroof4readtriplets

By Melanie Pearce via http://www.abc.net.au/local/photos/2015/06/24/4261157.htm

 

Author: Media Source

Share This Post On

Thanks for reading! Got something to say?

%d bloggers like this: