Club bands together for the Rubb family
HAMISH Rubb is just like other eight-year-old boys.
He loves music, picnics, listening to the footy, talking about his favourite teams and going to Parkrun – especially running fast with his dad and everyone cheering him on.
But Hamish, who is in Year 2 at Toowoomba West Special School, also has an undiagnosed genetic disorder and spastic quadriplegia cerebral palsy level five – a level of cerebral palsy that affects his whole body.
Hamish’s mum Sarah shared insights into Hamish’s life at the Toowoomba Rangers Rugby Union Club’s annual Old Boys Day, where the club presented Mrs Rubb and her husband Steve with the $5000 they had raised to help them out through several framed jersey auctions.
Mrs Rubb said her son was initially born with bilateral club feet and cleft palate of a soft palate (later diagnosed as part of Pierre Robin sequence).
Later, she said he was diagnosed with vision impairment, low muscle tone, plagiocephaly (flat head), torticolis (muscles tighten up causing his head to face the one way), severe scoliosis with a curve of 125 degree, arthrogryposis (joint contractures which limits movement of joints), cerebral palsy GMFCS level 5, central and obstructive sleep apnea and allergies and anaphylactic to nuts and eggs.
Mrs Rubb said her son needed 24-hour care and could not do anything for himself.
But she said it was his scoliosis that was causing him the most pain now.
“He is unable to be operated on as the surgery
is too high risk and not much gain if he would make it through the surgery,” she said.
“The scoliosis has caused Hamish to lose the function of one of his lungs and we have to be very careful for him to not catch any sickness as chest infections and pneumonia can be very life threatening.”
She said her son required
a lot of equipment to help him function daily and transportation was becoming increasingly difficult.
“As he gets bigger we will have to look at a new alternative for him, which is costly. It will be harder and more time consuming to get out and about, at present I can still lift him, but eventually I will have to
have someone with me or use a hoist wherever we go, which makes it hard as a lot of places apart from hospitals don’t have that equipment,” she said.
“Hamish’s doctors are still trying to diagnose his genetic disorder, which will not change Hamish, but may give us some insight into what his future holds,” Mrs Rubb said.
She said Hamish always required new equipment, which wasn’t always fully-funded by government agencies or at all.
She and her husband thanked the Toowoomba Rangers Football club and everyone involved for fundraising for their son.
“Any help is going to help as Hamish’s needs are going to be ongoing,” she said.