Providing 24 hour specialist nursing care, the Very Special Kids Hospice is a home-away-from home for families who have a child with a life-threatening illness that provides much-needed planned and emergency respite care. The hospice makes it possible for families to have a break, to go out for dinner, on a holiday, or just to go home and catch up on the sleep they so desperately need.
Seven year old Jazmin Makawe-Zaicz is a gorgeous and extremely resilient young girl that often stays at the Very Special Kids Hospice. In many ways Jazmin is like a lot of other girls her age, however she requires 24 hour care for all of her basic needs.
Jazmin was born prematurely at just 23 weeks old and as a result developed Cerebral Palsy. Because of this she suffers from many limitations, with the most problematic being chronic lung disease. Jazmin is also completely immobile, cannot speak and experiences hearing problems which she finds very agitating.
With Jazmin’s challenging condition, her parents Sue and Mick say they just wake up and do what has to be done every day, trying to always remain positive.
“She was on the edge for a long, long time” says Sue, “when she was born it was a case of getting through the next few hours, and then getting through the night and then maybe even the week. But for those first 9 months we spent in hospital, we were just hoping for that possible extra hour with our girl.”
“Now we focus on the basic goals, like getting Jazmin to be able to verbalise a yes and a no. Unfortunately for Jazmin she is very cognitive and switched on, but trapped in her body. We see her get more frustrated as she gets older, so if we can just work on these simple things, we think it could really open up her world.”
The Mackawe-Zaicz family turned to Very Special Kids five years ago, for respite care, support from a specialized counsellor, and a trained in-home Family Volunteer.
“It took us a long time to recognise that we needed help. Particularly from my end, because I felt like I couldn’t trust anyone else to take care of her” says Sue.
“Very Special Kids were the first source of help we ever accepted, and since then all of their services have made the biggest difference. Every time we turn up at the hospice Jazmin is all smiles, I can tell she loves going there.”
“Being offered the Family Accommodation when Jazmin first stayed in the hospice really helped too, to know that we were still really close but got to have our break.”
Very Special Kids’ family accommodation features two self-contained apartments, as well as a spa and private outdoor spaces. Families can stay in these apartments free-of-charge with their whole family while their child is in the hospice, or even just to have an escape.
“I remember thinking a few months into being supported by Very Special Kids, I didn’t know how we even survived up until this point” says Jazmin’s dad, Mick.
“When I think of Very Special Kids I don’t just think about the hospice, our counsellor Edwina is a huge part of our lives too. The amount of challenging times she has gotten us through, I don’t think we could have done all this without her” explained Sue.
Jazmin comes to stay at the Hospice several times a year where she loves participating in the school holiday programs, which often involve special guests and tailored activities for each individual child.
“One thing we really love about Very Special Kids is that all the staff, both in the Hospice and the whole organization take the time to actually engage with Jazmin. Some people find it really challenging because you don’t always get much back, but at Very Special Kids, she is always acknowledged, and so are all the kids.”
Help support families that have sick children like Jazmin
On the 17-23 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for families like Jazmin’s.
The funds raised from the challenge will directly enable Very Special Kids to undertake a large and important upgrade to Very Special Kids Hospice to ensure the charity can continue to provide benchmark standards of 24-hour nursing care for children with life-threatening conditions.
To sponsor a rider or to make a donation please click here.
Photo – Con Chronis