UNSURE about what the future holds for their son and brother, Conor Brown’s family is keen to make every moment count.
Conor, who many will remember for his work as a Little Telethon Star in 2012, has lived with systemic lymphangiectasia all his life.
The condition causes protein in the Atwell youngster’s immune system to leak into his body tissue causing severe swelling.
Very little is known about the condition.
Treatment involves regular trips to Princess Margaret Hospital where he has surgery to reduce swelling around his lungs.
His mum, Sam Brown, said the last six months had been particularly hard.
“It’s the complete unknown,” she said.
“We’re trying different treatments to keep him healthy.
“The last six months have been a bit touch and go but we’re banking on 2016.
“It’s really a year-by-year process.”
Keen to make the most of their time together, the family got to work earlier this year creating a bucket list of things they hope to tick off together in 2016.
Among the adventures planned is a day trip around Perth to visit local monuments, a visit to Monkey Mia to see dolphins, and a trip to Rottnest Island to see the quokkas.
Most of the list centres around WA sites, with Conor’s condition making travel difficult.
But there is one interstate trip, a visit to Sea World in Queensland, that the 11-year-old hopes to tick off.
In December the family received a GoPro from the Good Guys.
The camera will be used to record all the action from the family’s adventures in the New Year.
“It will be great to be able to record and share the experiences with people following Conor’s story and others in a similar situation,” Ms Brown said.
To stay updated, visit the family’s Facebook page.
Conor Brown’s bucket list for 2016:
-Stay at Crown and go to the Atrium for dinner.
-A day trip around Perth to visit the Perth Mint, the Bell Tower and Kings Park.
-A Fremantle Prison tour.
-Watch an Eagles game from a box.
-Trip to Rottnest to see the quokkas.
-Trip on the Prospector to Kalgoorlie.
-Monkey Mia to see and feed the Dolphins.
-Valley of the Giants.
-A trip to Jurien Bay.
-Trip to Sea World in Queensland.