Help Callum To Thrive

Callum is one of about 30 people in the world with his variant of centronuclear myopathy (CNM), a genetic condition that he was born with and that has left him extremely weak and in an electric wheelchair.

From birth Callum has had extremely weak muscles, a condition that has caused many side-effects such as pneumonia, carbon dioxide toxicity, an inability to walk or perform 'normal' tasks, eye problems, digestion issues (he has a tube that allows him to be fed a liquid nutrient solution straight to his stomach), respiratory problems and more.

Thankfully, Callum’s brain has not been affected at all by his condition and he’s a very smart young man with lots of friends at school and elsewhere.

Because of the rarity of Callum’s condition not much is known about his prognosis and it was only when Callum was 11 years-old that we received a diagnosis for him. Unfortunately his prognosis isn’t fantastic and we're seeing a deterioration in Callum's ability to do things he used to do such as eat.

Throughout his life Callum has become used to staying in hospital and he now knows many of the personnel at Sydney Children’s Hospital through dozens of long admissions because of respiratory issues and testing to ascertain the nature of his condition.

It was thought that although Callum was very weak his condition would not become worse. We were wrong. Over the last four years or so Callum has lost the ability to walk, lost the ability to breathe on his own while he’s asleep and his eyesight has suffered enormously.

The last year or so was an enormous trial for Callum which culminated in a very traumatic, new type of spinal fusion. He had been unable to commute in a normal car or sit in a normal chair because his back was arched toward his chest (it’s a condition called lordosis) and his neck muscles were so contracted that his head pointed towards the sky. The spinal fusion involved inserted two titanium rods alongside both sides of Callum’s spine, from the top to bottom of his back, and severing the neck and shoulder muscles to release the contraction. It was a very long operation in which Callum lost a massive amount of blood. Unfortunately, too, Callum’s respiration was severely compromised during his recovery when his left lung collapsed and he also lost the ability to swallow; an issue which persists. Watching Callum in so much pain has been very difficult.

Thankfully, Callum is progressing really well with his recovery from his spinal fusion, though he will always require the use of his electric wheelchair and can no longer really enjoy a meal because of the inability to swallow effectively.

The reason we’re raising funds is to allow us to purchase a wheelchair accessible van as well as mobility / disability aids such as a patient lifter, tiltback commode and also to pay for support workers. Although Callum receives some funding for his needs it is very slow and can't be accessed as quickly required. It just doesn't cover Callum's complex needs.

Other aids include a shower commode, bathroom railings, hospital bed etc. They are enormously expensive but critical items.

Callum has many interests; he loves gaming, exotic cars and motor racing. He does really well at school, in particular mathematics. Callum wants to start exploring his home city of Sydney, Australia more and going to sporting events. He's hoping to pursue a career on the stock market

With your help Callum will be able to have more freedom to live life without too much discomfort and pain.

Thank you so very much! Please remember to share! :)