Monthly Archives: April 2018

Talking with siblings about the tough stuff

By Mary Ryder, Family Support Practitioner at Very Special Kids

We recently held another two sibling days at Very Special Kids and on these days, alongside all the fun and games we often witness the children talking about their experiences of living with their sick brother or sister. We try to create a safe place for this to happen. However most of their conversations will be at home, maybe at school, or other places where they spend time with trusted adults.

Children are like sponges soaking up and absorbing what happens in the world around them and then actively seeking out information. They tune in to the atmosphere around them, and if they are unsure about what is happening, may make up a story that they think fits with what they know. Unfortunately they can get it wrong. This is why talking with siblings is so important and responding to questions with honesty and truth cements their trust in the adults around them.

When the going gets tough questions can be challenging and confronting: why is my sister so sick? Why can’t she talk like me? Is she going to die?

Of course every child is unique and parents know their child best. There are no right answers, but there are some approaches that can help you navigate this tricky terrain. Adults often worry that children will not cope if they know too much. However talking to children in simple and straightforward language in a way that fits with their age and developmental stage will help allay anxiety and fears.

Listen carefully to your child and follow their lead. Children will usually only ask what they want to know – so information can be given bit by bit. Let your child know they can continue to ask you questions. The answers may be tough but there is evidence that children cope better and are less anxious when they are responded to honestly and with realistic reassurance. By talking with your children you enable them to:

  • Trust that you will give them the information that they need
  • Help them begin to process their emotions and feelings
  • Feel included and not isolated
  • Feel safe to ask any questions they have

Courage and a willingness to talk about difficult matters teach our children that hard conversations can happen safely and that they can talk with you about anything.

To find out more about Very Special Kids Sibling Support Program click here. 

Team Sebastian and Charlie

Danielle and Richard Burnet will be competing in the 24 Hour Treadmill Challenge this year yet again, with their team filled with friends, family and colleagues. The team is dedicated to Sebastian and Charlie, their eldest sons.

Sebastian, now 11, was diagnosed with an extremely rare genetic condition called Multiple Sulphatase Deficiency, right before his second birthday.

“The disease only affects one in 1.4 million kids. So to say that we were shocked beyond belief is an understatement.” Said Richard.

Already struggling to believe the information, Danielle and Richard then found out that Charlie, his younger brother whom is now 10, also has the disease.

At first they were told it would be unlikely the boys would live beyond the age of five, with the potential of suffering symptoms of the condition like developmental delays at around 18 months, extending to muscle wasting, progressive loss of vision leading to blindness, paralysis and then dementia.

Now Charlie and Sebastian are unable to eat themselves, walk or talk, they are in wheelchairs, and they are constantly taking medication.

Danielle and Richard do have two healthy younger children, Taylor 6 and Christian 3, and despite their brother’s inability to fully communicate, Christian and Charlie have a very strong connection.

“Both young ones are growing up to be very loving children, as they are surrounded by differences, learning to care and be more aware from such a young age” explained Danielle.

Sebastian and Charlie are regular visitors of the hospice and Danielle feels very grateful that the service is there for them to utilise. She is also very grateful for her Family Support Worker Jess.

“I love her, she’s my life line, and she understands me and my family situation. She supports me and the challenges, she gives me clarity” said Danielle. 

In 2017, like previous years, Danielle and Richard participated in the 24 Hour Treadmill Challenge, raising an outstanding $40,973, with Richard being the highest individual fundraiser for the entire event.

Danielle is very passionate about the event and loves getting people on board.

“This is a great way for us to get our family, friends and colleagues involved with what our family experiences. The event is so positive and unique, I have never seen one so different and quirky, it generates nothing but good feelings and everyone loves to get involved” she said.

“Before we were told of Sebastian’s and then Charlie’s diagnosis, we had very few cares in the world, like most other people. Then all of a sudden you’re hit with this bombshell and it changes your perspective on everything.”

To sponsor a runner or to make a donation to support families like the Burnet’s, please visit: