Roy is an active nine year old boy from Melbourne, with a noisy four year old brother and baby sister. He loves playing cricket and footy and thinks everyone else should too according to mum Tina.
Mia has been a friend of Brainwave for three years. We first came to know Mia when she was 12 months old—Mia had been diagnosed with Krabbe Disease, an extremely rare and fatal degenerative neurological condition that affects the myelin sheath of the nervous system. There are two known cases in Australia.
12 year old Thomas is social, lovable and energetic. He is always happy and smiling and never fails to brighten up his family’s day. Thomas loves being kept busy with playgrounds and swimming, amusement parks and when time and finances permit, Thomas loves a holiday.
Brodie loves swimming, music and open spaces to do tricks with his wheelchair. He also has an incredibly rare disorder.
Brodie and his family have embraced the support offered by Brainwave by attending our recent camp. “It provided a fun and supportive weekend away with other families like us. We don’t have to explain anything, the support is just there. Camp Brainwave allowed us to forget about the regular hospital visits and doctor appointments. It was such a delight to see my whole family smiling.
Ace is a rambunctious little guy – he loves riding his bike, going on the swings and playing with his toys – anything physical!
Ace was at the Christmas Party at Luna Park in Melbourne last year and his mum, Bianca says “it didn’t matter if your child was in a wheelchair or using a walker – it was just a day where everyone had fun and everybody made fantastic memories. To see Ace’s face and hear his squeals on the roller coaster was just something that we’ll remember forever.
Three year old Lucy loves to be part of the family action and keeping up with her four older siblings is top priority. When Lucy was three days old her mum and dad started to get clues that she had some health issues.
Michael from Preston Victoria, is 12 years old and has an older brother and younger sister. He was diagnosed with Metachromatic Leukodystrophy in 2006. Myelin is the substance that surrounds and insulates the nerve fibres in the nervous system. In leukosdystrophy the myelin is damaged causing loss of normal brain and bodily motor functions. His condition renders him bed bound. Michael is seen by doctors at the Royal Children’s Hospital, where he is often admitted with respiratory issues.
Jackson became known to Brainwave through The Royal Children’s Hospital in Melbourne. Jackson is 16 years old and is the second oldest of our four children. He lives with his mum, dad, four siblings and two best friends; Chester his Labrador and Odeon the family’s German Shepherd.
According to mum, Maree, “life was good until Jackson showed no signs of weight bearing and could only sit. They always say that a mum knows best and I had this gut feeling that something was not quite right even though our doctor said his motor skills were just delayed.”
Learn more about this resilient, positive and inspirational young man and his amazing family.
Ruby has a rare neurological disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) that was triggered by a mild pneumonia she suffered shortly before her 5th birthday.
Ashton was born eight weeks premature after his mother Sarah experienced a very turbulent pregnancy. At five days old it was discovered during a routine brain ultrasound that Ashton had a rare brain abnormality. The doctors were unable to tell Sarah and Justin what exactly this would mean for Ashton, they just had to wait and see how he would develop.
Four year old Luca is one of the family. At six months of age, Luca endured a seizure that lasted for over an hour. In the following 12 months, Luca continued to experience prolonged seizures, resulting in a number of admissions to Intensive Care. Eventually diagnosed with Dravet Syndrome, a rare but severe form of epilepsy, he was also diagnosed with developmental delay at two as a result of his condition.
Austin aged 2 years was diagnosed with Merosin Deficient Congenital Muscular Dystrophy at the age of one. This condition causes hypotonia (decreased muscle tone, floppiness) and reduced movements and contractures in the hips, knees and elbows. Austin requires full support in all positions and is totally dependent on his parents for all his mobility and daily care.
Sebastian had just started his first year of primary school. Having been a socially reserved child in kinder, we saw Seb grow in confidence with his peers and with the older children at school. He excelled academically, enjoyed PE and playing with friends.
Destiny’s early years were a blur of doctors, medical diagnoses and hospital stays. Her mum was 22 weeks pregnant when she learned Destiny had Down Syndrome. Her daughter had a massive stroke at birth and developed major heart problems, necessitating a seven-month stay in the Royal Women’s Hospital’s Special Care Unit.
Max was born with Ohtahara Syndrome, a severe form of epilepsy that causes continuous infantile spasms. He was diagnosed at one month of age, when his older brother was three. Max's parents were told that without surgery Max’s life expectancy would be very short.
When the parents of Chandelle were told she had a rare form of ‘fluid on the brain’, she was one month old. She underwent multiple surgeries and developed post-operative meningitis. At five months of age Chandelle was diagnosed with cerebral palsy, most likely the result of brain damage caused by her conditions.
This is Jack. Jack was born with a rare genetic condition called Sotos Syndrome. This causes physical overgrowth during the first years of life and often means delayed motor, cognitive and social development, low muscle tone and impaired speech.
As a baby Lucy suffered from infantile spasms – a form of epilepsy that was never cured despite repeated treatment attempts. She also developed a severe intellectual disability, the cause of which has continued to elude her doctors.