Fly for the Kids Patient Stories – Brandon Stroud
Australian Capital Territory
Concerned about her son Brandon’s slow motor development, Carolyn visited his child health nurse for answers. Subsequent referrals to a paediatrician, as well as blood test and a muscle biopsy confirmed a devastating diagnosis.
Brandon had Duchenne Muscular Dystrophy (DMD), a genetic disorder where patients lack the protein dystrophin, causing their muscles, including the heart, breathing muscles and those that hold the spine straight, to deteriorate.
“We were completely and utterly devastated to learn that Brandon had a terminal condition with no cure. That he would be in a wheelchair by age 10 and his life expectancy was only 19 years of age,” said Carolyn.
Hearing a news story on DMD and Dr Andrew Kornberg’s clinical and research work, Carolyn and husband Russell requested an appointment with him. Andrew has been caring for Brandon ever since.
“Andrew is a brilliant doctor and a friendly and compassionate man. We completely and unreservedly trust him with Brandon’s care. He has provided us with immense support and built a wonderful rapport with Brandon and our family. We are also thankful for the outstanding care Brandon has receives from all the staff at the RCH.”
Though Andrew is Brandon’s primary specialist, Brandon sees clinicians in physiotherapy, occupational therapy, endocrinology, cardiology, neurology, osteopathy and respiratory medicine. Brandon also undergoes regular blood tests to monitor his condition, bisphosphonate infusions to harden his bones, and takes steroidal medication to help him maintain muscle strength. He is also taking part in a clinical trial coordinated through the hospital and visits the RCH every 12 weeks.
Through his comprehensive treatments and Andrew’s excellent care, Brandon continued walking until just before his 16th birthday, which is six years longer than expected.
“Not only did this have significant health benefits for Brandon including maintaining his strength for longer, it helped him adjust to his deteriorating condition. Also, due to the care he’s received, physical therapies at home and research developments, Brandon’s expected to live longer than the 19 years we were first told over 18 years ago.”
Seeing how great care has helped Brandon, Carolyn is keen to support Fly for the Kids, Andrew’s fundraiser for RCH Neurology.
“It’s so humbling that our doctor would do this for the children. We have been fortunate to receive outstanding RCH care and the hospital needs support to continue to deliver these services. To be able to access high quality healthcare, visit beautiful facilities and see friendly staff is very important to children and their families during such difficult times. It all makes a huge difference.”