Monthly Archives: February 2018

Road to Respite – Helping families in Geelong

Last week we announced that we had formed a significant partnership which would enable regional families living with a child that has life-threatening illnesses the opportunity to access respite care.

Thanks to over $156,000 of funding from the William Buckland Foundation, Road to Respite is a joint initiative of Very Special Kids and the Royal Flying Doctor Service (RFDS) providing free-of-charge transport for regional children with life-threatening conditions to Very Special Kids Hospice in Malvern.

One of the families that have already benefited from the new service is the Bell family from Geelong.

Thirteen-year-old Alivia Bell was born with Rett Syndrome, a severe genetic disorder of the nervous system. Alivia can’t walk or talk, has frequent seizures and requires 24-hour-care for all her basic needs.

Mother Fiona explains travelling with Alivia can be difficult because of her high needs.

“Driving a long distance with Liv can be stressful and I avoid doing it on my own. It helps having an extra pair of hands to help monitor her seizures and behaviour, to feed her and make sure she’s entertained as she can get irritated easily.”

But finding an extra person to accompany Fiona on drives isn’t always easy as her partner Michael works full time.

The family first trialled the Road to Respite service in January and Alivia was picked up by the van the same morning the family set off to Byron Bay for a well needed break.

“Alivia went for her holiday at Very Special Kids and it allowed us to go on our holiday where we could regroup and have a breather. Having Liv picked up certainly took away a lot of stress and it felt like more of a holiday because we didn’t have to worry.”

We are so thankful to all involved for making this service available and look forward to seeing it help more families in need.

Alivia3

Overcoming anxiety to use the hospice 

By Abigail, mother supported by Very Special Kids

Letting your child stay overnight for the first time somewhere is a big deal.
Letting your 3-year-old is even harder.
But letting your 3-year-old who has a life-threatening, complex medical condition stay overnight without you is almost unfathomable!

We had been recommended to do this. We hadn’t had a break in years and finding people that would take Matthew’s complications and needs in their stride while still getting to know the little boy he is, was completely foreign to us.

The Very Special Kids Hospice did that for us.

We had previously attended the open day where we were shown around the hospice facilities, we heard wonderful stories and we met some great families. We saw the family accommodation and said to ourselves that we would definitely come as a family and stay some day with our other children.

When we finally did get there the hospice staff had actually called us, asking if Matthew wanted to come stay for a few days, due to a booking being cancelled. It took me over 4 hours to get his stuff ready that day and we were so nervous that they would miss some subtle sign our non-verbal, developmentally delayed little boy was trying to communicate, or that he wouldn’t enjoy being left.

That was not the case at all though. They did such a brilliant job with him and I got a call from our family support practitioner that visited, saying she went past while he was having music therapy and told us he was dancing and singing!

The next time Matthew visited, we rolled him into the foyer area there and he started dancing and getting excited in his chair.

It brings tears to my eyes now remembering the first time we saw recognition and excitement in Matthew, it was clear that he loved the hospice and was excited to be there again.

What more could I ask for? I say – if you’re considering it, do it!

Yes it is a daunting process, but it will get better, and your child will have the best qualified and caring staff watching over them, and have an absolute blast at the same time.

Very Special Kids hires a Physiotherapist

Last year Very Special Kids secured a funding grant from the Barr Family Foundation that meant we were able to hire a permanent part-time physiotherapist.

Physiotherapists work to improve children’s motor development, strength, range of motion, fitness, gait difficulties, balance, coordination and respiratory function.

Belinda Luther, is now at our hospice 5 days a week, every morning, and has extensive experience in the paediatric physiotherapy industry.

Working at the Royal Children’s Hospital for 10 years and then in a private practice since 2004, Belinda has been involved in various research projects that have benefitted her practice and is excited to join the team at the hospice.

“I always liked the hospice environment when I had previously visited. I love working with the nurses, carers and collaborating with the art and music therapists enables a much more fun and holistic approach to my work, which is benefitting the children” she said.

Belinda had previously treated a few children in the hospice, so becoming permanent meant her work was able to be sustained and make more of an impact.

“I think the main benefit of having physiotherapy offered in the hospice is so that I can continue a child’s regular physiotherapy program. I can monitor a child’s respiratory needs and treat them accordingly. I can assist with positioning children optimally, monitoring their equipment and splints. I can also assist with their musculoskeletal needs, including flexibility, strengthening, balance, mobility – whatever a child’s particular needs are. It’s completely individualised and primarily about adding quality to their life” said Belinda.

Physiotherapists help to maintain and develop functional skill level and range of movement in order to minimise joint contracture and postural deformities.

“I am really keen to learn about what families would like me to focus on and urge parents to chat to me about their child’s physiotherapy program outside the hospice. I’m also keen to make stronger connections with the community physiotherapists involved with the children.”

The helping hand that won’t let go

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

Photo – Con Chronis

Road to Respite

Today Very Special Kids launched a significant partnership with the Royal Flying Doctor Service which will enable families living with a terminally ill child the opportunity to access respite care, no matter where they live.

Thanks to over $156,000 of funding from the William Buckland Foundation, Road to Respite is a joint initiative of the two charities, providing free-of-charge transport for regional children with life-threatening conditions to Very Special Kids Hospice in Malvern.

Over a two year pilot program, the Road to Respite van donated by Ambulance Victoria, will transport an estimated up to 90 children to Victoria’s only children’s hospice where they will receive specialised 24-hour nursing care free-of-charge giving their parents a much needed break.

One of the families that have benefited from the new service is the Chignell family from Bendigo, trialling it for the first time in October last year.

Ten-year-old Eadweard Chignell was born with early infantile SCN1A encephalopathy, an extremely rare genetic disorder, so rare he’s one of nine in the world with the condition. Eadweard can’t walk or talk, has regular seizures and requires 24-hour-care for all his basic needs.

Parents of five Sarah and Stuart say the Very Special Kids Hospice is their only respite and because of where they live and the complexity of Eadweard’s condition, they can stop up to five times in one trip, adding a great amount of time and stress.

Michael Wasley, CEO of Very Special Kids says “this unique partnership will help overcome the barriers that restrict regional families from accessing much-needed support services. Using RFDS expertise in healthcare and transportation, we are delighted to be providing safe transport at no cost, reducing fatigue in carers and increasing the health and well-being for children and their families.”

Turi Foods Adventure Park Day

Very Special Kids Family Day programs go far beyond just facilitating a day of fun for kids, they create something that means a lot more.

This year’s Adventure Park Day was its fifth year running and had the best turn-out to date. 209 people came together, on what was a beautiful, sunny day, to connect over their shared experiences of caring for a child with a life-threatening condition or having lost a child to a terminal illness.

In total there were 47 very special children accompanied by their siblings and parents.

The face painter was a hit and there were many smiles, laughs and precious memories made by the families.

We want to say a huge thank you to Turi Foods for making this family day out possible and helping to make a positive impact on the lives of Victorian families.

“It was great seeing how all the very special kids had grown up so much. I think the relaxed atmosphere of the day makes it much easier to have a conversation. You learn from each other about the latest surgeries, drug therapies, equipment and even diets. Having the whole day together rather than quick catch ups makes a big difference. We are all in the same boat after all so it’s great how everybody is open and honest about what’s working for their family and what isn’t. It’s sometimes very challenging and overwhelming being a parent of a child with profound disabilities who is medically fragile.” Very special mother, Barwon region  

We are so glad that all the families enjoyed their day, to find out more about Very Special Kids family programs contact your Family Support Practitioner.