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4
Apr 2017

Running for 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 10, 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 8, 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 5 and Christian 2, 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 2016, like previous years, Danielle and Richard participated in the 24 Hour Treadmill Challenge. Only this time, they began Team Seb and Charlie, which was made up of mainly friends and family, raising almost $28,000.

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 show your support for families like the Burnets you can sponsor a runner by clicking here.

Burnet Boys


Categories: Family News, Fundraising News, Very Special Kids News
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