MUM’S PRIDE HE CAN’T SPEAK... BUT HIS SOUL SHINES
Imagine the heartache of discovering your precious toddler – conceived via IVF after multiple miscarriages – has a degenerative disease so rare it affects just 100 people worldwide, and there was no cure.
Many of us would be overwhelmed by despair, but Sasha Campbell, 39, is no ordinary mother.
When doctors broke the news that her much-loved two-year-old son Quinn had Mucolipidosis type IV (ML4) – an exceptionally rare genetic condition characterised by vision impairment and delayed development – she decided to tackle the diagnosis head on.
‘I already knew that the news was not going to be pretty. It was almost a relief to get the diagnosis, knowing that finally I had that answer. Once you get sufficient answers you can start planning for the new course of life that you are going to take.
‘I had a supportive network with my family and friends, and no matter how hard it would be, we would push through, we would pull together, and somehow we would survive.’
It wasn’t until Quinn was about a year old – and still not responding to his name or crawling – that primary school teacher Sasha began to suspect something was seriously amiss.
After a myriad of tests Quinn was diagnosed with ML4, when he was one-and-a-half. There is no treatment or cure.
Now aged six, he has lost his vision, is unable to walk, talk, dress or feed himself.
But despite his disabilities, Quinn’s condition hasn’t held him back from living a full life jam-packed with joy and laughter, thanks to his devoted mum Sasha, his father Rhett, big brother Laif, 10, and little sister Harlow, three.
‘Quinn laughs at least once a day, he has the most wicked giggle. Sometimes it’s an unusual sound, a lot of the time it’s his brother or sister doing something,’ says Sasha.
‘It could be just going up and tickling him, it could be my son rubbing his forehead against Quinn’s forehead. Or Harlow putting her jewellery all around Quinn’s neck and hair ties in his hair.
‘This is how they play together. They find ways to interact which are just beautiful. These are the positives that come out of it.’
Another one of Quinn’s great loves is school.
‘He gets to go on a bus, and every day that bus cannot come quick enough,’ laughs Sasha. ‘Some days he doesn’t even want to get off the bus. The other day he wouldn’t let the bus driver take his seatbelt off, so I had to go on and do it. He loves his friends at school and all the stimulation he gets; he goes swimming, he has a music program, he even goes to the library.’
Sasha says Quinn is thrilled by car trips and experiencing new things. He’s also very sociable.
‘Everyone takes the time to say: “Hello Quinn” and ask how he’s getting along and treats him with as much normality as is possible. He is a person, and he has a heart and a smile just like anyone else. ‘He’s a beautiful soul.’ That is not to say Sasha doesn’t worry about the future.
‘Every single day I worry about Quinn, every time I get asked a question, he is my first thought.
‘We constantly think what
life is like for Quinn now, what life is going to be like for Quinn in five years time, and what life is going to be like for Quinn when he’s an adult because the life expectancy is 40.
‘This is the reason we decided to go ahead and have Harlow, to ensure he would have plenty of love around him, that life would be full of quality, and enjoyment.’
So where does this incredible mum find her strength?
‘From Quinn’s laughter and the fact he’s not in pain,’ Sasha says. ‘My friends call me Miss Positivity. I’ve always been the person who faces up to whatever challenges life throws at me, and takes them on board with dignity. I always find the silver lining.
‘I truly believe we were meant to have Quinn. He was very much wanted as we’d suffered a number of miscarriages. All the hardships we had faced, we thought they were all behind us. But every setback was to prepare me to make me stronger.
‘Quinn is very much a part of our family and it is our normal, our way of life. Every day is difficult, but that’s just the level that we function at.
‘It wasn’t what we’d planned, but we’ve embraced it. Quinn opens my eyes to appreciate all the little things and not worry about the big things unless they are going to be lifelong.’