Six-year-old Connor has been battling tumours his whole life. An early childhood spent in hospital has left him with some catching up to do regarding his fine motor skills, and it turns out LEGO is a ‘fine’ choice to help his development!
Connor was diagnosed with ganglioneuroblastoma, a rare tumour that mainly affects infants and young children under the age of 10, and is typically found in the vertebra, adrenal gland and occasionally the neck and pelvis, when he was just two-and-a-half years old. In Connor’s case, he had a large one on his neck and chest.
“It was pressing on his trachea, which gave him breathing problems,” explains his mum Emma.
He was also born with neurofibromitosis; a genetic disorder that causes tumours to form on nerve tissue. As a result of this, Connor also has several low-grade tumours on his brain, which, thankfully, present no danger to him at this stage.
A long road
“After Connor was diagnosed, he went through two rounds of chemotherapy to reduce the size of the tumour on his neck and chest, which was the one doctors were most concerned about, but that failed, so it was removed via surgery.”
The 10-hour operation involved cracking open Connor’s ribs to access the tumour. Unsurprisingly, the recovery was extremely painful.
“Because of the location of the tumour, he also has vocal cord palsy, which has left him with a very husky voice.”
Unfortunately, the operation couldn’t remove it all – which has experts keeping a close eye on things.
“He has scans every three months to make sure the tumour isn’t getting any larger,” explains Emma. “It’s close to his spinal cord and the concern is that if it does grow, it’ll compress it.”
Connor is in partial remission and that means he doesn't need to manage his immune system as strictly as was required when he was going through treatment.
“He doesn’t need to isolate any more. He’s allowed to be around friends and family, which he loves.”
Thankfully, most of his treatment happened before he started school, so academically he doesn’t have any catching up to do – and he’s enjoying it so far.
However, his fine motor skills aren’t as developed as those of his peers. So, to help Connor continue his development, Satan’s Little Helper sent him a few new LEGO sets.
“It helps strengthen his fine motor skills by working on the muscles involved in those little movements, as well as building his hand-eye coordination,” says Emma.
“He was seeing a physio for a while after his treatment and that’s one of the things they recommended.”
It also helps fend off the boredom of frequent hospital appointments and, importantly, puts a smile on the face of a deserving kid.
“He always takes a few sets with him, because there’s so much waiting around and this will help him pass the time.
“He absolutely loves them. He was super stoked to see a parcel with his name turn up at our house and he couldn’t believe it was all for him!”