Two & half years ago (2018) my daughter, Brielle was diagnosed with a rare disorder that effects her whole body. It’s called Ehlers-Danlos Syndrome (EDS). A connective tissue disorder. Connective tissue is Collagen & it’s the glue that holds your body together.
There are 13 sub-categories of which she unfortunately has the Vascular EDS type.
Her specialists can only treat her symptomatic ally as there are no cures.
No two EDS people are the same, hence why there are no specific EDS treatments. As what works for one may not necessarily work for another.
Brielle had been a sickly child all her life & the medicos could not explain why.
At age 18 she was studying Year 12 & had 2 part time jobs & a traineeship as a Beauty Therapist. She had her own car & her freedom. She had a great social life, school & her jobs.
Then in April that year Brielle’s health started declining. It started with her shoulder not staying in place & went from there.
2018 was her first of many many trips & stays the Austin Hospital. The first was 2 weeks & I didn’t know what I’d do for accommodation, especially concerning the financial side.
I ended staying at a Motel nearby with my Mum until a family friend told us about Ryder-Cheshire Homes in Ivanhoe.
RCH was perfect for what we needed. It had a kitchenette & we could finally wash our clothes in the laundry there.
But RCH is more than that. It feels like a home more than temporary accommodation.
The staff are incredibly beautiful & gracious. Nothing ever seems to be too much trouble.
Since Brielle was diagnosed I’ve stayed at RCH a total of 16+ weeks.
We’ve met some incredible people whilst staying there. We are all weathering storms but just in different boats. And this makes the stay somehow more normalised as you don’t feel so alone.
And although it’s always a tough journey when Brielle is in hospital, especially for her, I find respite & peace whilst gardening there or helping out with the laundry. Especially whilst the COVID restrictions have been in force.
Ryder-Cheshire Homes & the staff are an absolute blessing.
-Donna McPhee
You must be logged in to post a comment.