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Seven-year-old William Watson and five-year-old Hamish Waston have an extremely rare genetic condition. The brothers are two of only six cases in Australia and 60 reported cases worldwide. The condition, Adenylosuccinate Lyase (AdsL) Deficiency, has caused severe progressive neurological damage to both boys. They require wheelchairs for mobility and suffer from daily uncontrolled seizure episodes. Mum Natalie said the boys need constant care. "Brian and I are their arms, legs and voice. We help them with every aspect of daily...

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Categories: Fundraising News

Very Special Kids Chief Medical Officer Dr Simon Cohen shares his thoughts on the need for more resources for paediatric palliative care. This opinion piece originally appeared in the Medical Observer. In the developed world, death in childhood is relatively uncommon, and when it happens, or a limited prognosis is given, it seems more of a failure of modern medicine. Despite its rarity, there is a significant number of children with life-threatening conditions, and this is increasing. A recent paper...

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Categories: Very Special Kids News

In the lead up to the 24 Hour Treadmill Challenge from 22 to 23 May we interviewed Family Support Worker, Mei Goh about her work with Very Special Kids families and why the challenge is so important Q: What do you do in your role at Very Special Kids? A: I work directly with the children, parents and siblings. I have a multi-faceted role. Depending on the family’s needs, I provide a range of support services including formal and informal...

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Categories: Fundraising News, Hospice News

Very Special Kids celebrated the opening of its renovated family accommodation, and the success of the Chain Reaction Challenge Victorian riders, at a special event in one of the new family apartments. The event was attended by riders from the Victorian chapter of the corporate cycling event Chain Reaction Challenge, who have collectively raised more than $2 million for the event’s charity partners over the past two years. $563,000 of that has funded the Very Special Kids family accommodation renovation...

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Categories: Fundraising News

When Belinda and Craig Mullans’ first child was born, they had a picture in their mind about what life would be like with their baby boy. However, it didn’t turn out as planned. “My first Mother’s Day was not at all like I expected it would be. Jack was only three weeks old and he was still in intensive care. We were unsure about whether he was going to make it," Belinda said. “He had a brain hemorrhage while in-utero...

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Categories: Fundraising News

The recent Volunteer Professional Development session focused on working with children who are non-verbal and included expert advice from a Speech Therapist. Gill Greenwood, a Speech Therapist from Glenallen School, facilitated the session where volunteers were given the opportunity to experience non-verbal communication. They shared thoughts and ideas about the challenges but also the rewards of working with children who are non-verbal. Volunteers also heard indirectly from a child who is non-verbal about their experiences of having to communicate in...

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Categories: Volunteer News

15-year-old Jack Evans is a huge Hawthorn supporter, loves exploring Melbourne, playing with his younger brothers and talking circles around Very Special Kids Hospice nurses. However, when Jack was first born, his family were told he wouldn’t live past two years old. Spinal Muscular Atrophy is a genetic disease that meant Jack was very sick as an infant and still requires care 24 hours a day to meet his needs. Jack is in a wheelchair for posture and mobility, is tube-fed, and...

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Categories: Fundraising News

As a parent of William and Hamish, who both have the same extremely rare genetic condition, Mother’s Day holds special meaning for Natalie Watson and her husband Brian. “Mother’s Day is a day that we remember our beautiful mums and show appreciation for all the little things they do for others with love and unconditionally. It’s a day we give ourselves permission to take a break from doing and just enjoy the moments and relationships we have with our children....

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Categories: Family News, Fundraising News, Hospice News

In the lead up to the 24 Hour Treadmill Challenge from 22 to 23 May we interviewed Jodie Lapthorne, a Very Special Kids Hospice nurse, about what inspires her and the advice she has for 24 Hour Treadmill Challenge participants. Q: Tell us about your role A: My role involves many things from giving out medications to giving out cuddles. It is a big responsibility to be caring for someone else's child and often they cannot speak for themselves. I...

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Categories: Fundraising News

Children staying at Very Special Kids Hospice in the Easter holidays enjoyed a range of activities including a trip to the children's farm, a circus on wheels and planting flowers.   An Easter grotto.   Painting with The Art Cabriolet therapist Svetlana.   A trip to Bundoora Park Children’s Farm.   Mesmerised by colourful ribbons with Isi from Ready Set Play Kids - Circus on Wheels.   Getting hands dirty planting Autumn Hyacinth bulbs to take home.  

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Categories: Hospice News