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With only days left in June, you can help families

With only days left in June, you can help families living with the uncertainty of a condition like PMD make every precious day count.

“Alex was just a baby when he was diagnosed with PMD. His doctor ordered a blood test when he started missing his milestones. And a few days later, we got the news that changed our lives completely and forever.”

Diagnosed with the very rare Pelizaeus-Merzbacher Disease (PMD), it was shocking for Bess and Mitch to learn that Alex would require 24/7 care for life.

He would likely never be able to walk or even talk on his own. And whilst some children with this diagnosis survive into adulthood, many more don’t. That’s why support from Very Special Kids is so important for families like Alex.

Very Special Kids volunteer, Tina came into their life when they needed it most.

Will you help fund vital respite and support services that have brought so much joy and comfort into the life of Alex and his entire family?

You can help provide the funding needed to train Very Special Kids volunteers to support families with the demands of caring for a child or young person with a life-limiting condition.

Please donate today through the link in our bio.

#veryspecialkids #linkinbio

“My daughter Amber passed away nearly two years

“My daughter Amber passed away nearly two years ago in August 2020. She was only 10 when she died from complications related to her neurodegenerative condition.

I was a single parent, and Amber was my only child. I was devastated when she passed away and wanted to surround myself with things that reminded me of her. Our Family Support Practitioner informed us that Very Special Kids had a volunteer who could make a memory quilt from Amber's clothes and bed linen.

We luckily had enough items to make not only this beautiful quilt, but also five cushions that I was able to give as gifts to immediate family members who had helped care for Amber. I am in awe at the detailed work that the volunteer did with Amber's memory quilt and will be eternally grateful to the amazing job she did with both the quilt and the cushions.” - Very Special Kids mum, Jennifer

Thank you, Bayside Quilters, for your creativity and generous time, stitching together beautiful keepsakes for families like Jennifer’s.

#veryspecialkids

On a perfect Autumn day, a group of bereaved famil

On a perfect Autumn day, a group of bereaved families came together on the front lawn at Very Special Kids in Malvern. Our beautiful trees had turned an amazing array of reds, yellows and oranges, falling to the ground to make a sea of colour.🍂🍃🍁

Families enjoyed a picnic afternoon tea and shared their personal connection to Very Special Kids, while the siblings of the very special children created some amazing pieces of art with our volunteers.

#veryspecialkids

Your support can help make every precious day coun

Your support can help make every precious day count for kids like Alex ❤️

When Alex was first diagnosed with Pelizaeus-Merzbacher Disease (PMD), parents Bess and Mitch’s world was turned upside down. It makes walking and talking on his own impossible and whilst some children with this rare diagnosis survive into adulthood-many more don’t.

When a child has a life-limiting condition like PMD, it affects the whole family. Every day brings challenges and sacrifice - not just for Alex, but also for Bess, Mitch and his little brother Riley.

Your support will help bring families like Alex’s the moments of comfort and joy they desperately need.

It can help fund counselling and support services which provide the emotional and practical support Bess took great comfort in.

“I thought I could do it all on my own in the beginning. But of course, I couldn’t. And I’m so grateful Very Special Kids were there for me when I realised that.”

So little is known about Alex’s condition that no one can say for certain what the future may hold for him, and even whether he will make it into adolescence and beyond. But with people like you by their side, they won’t have to navigate the unknowns alone.

Your support is crucial. Please donate today through the link in our bio.

#veryspecialkids

Sending out a very special thank you to Jimmy Bart

Sending out a very special thank you to Jimmy Bartel, who completed a huge 100km treadmill walk two weeks ago! 👏

Jimmy has raised almost $40,000 that will help us continue to provide holistic palliative care for children, young people and their families across Victoria. Hear from Jimmy when he finished his massive effort here.👆

Thank you so much to Jimmy and 3AW for their ongoing support, we couldn’t do it without you!

#veryspecialkids #flashbackfriday

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