Two-year-old Quinn Stewart has a rare condition which means she can’t walk, talk or sit up by herself. But the tot, from Edinburgh, has a smile that her mum says ‘lights up the room’.
She has Baker-Gordon syndrome, a rare genetic condition which causes neurodevelopmental impairments. Her mum Teri says she’s believed to be the only child in Scotland with the condition. Every day tasks can be a worry for mum-of-two Teri, as Quinn has low muscle tone (hypotonia) which means she struggles with head control, so she can't hold her head up fully or sit up by herself. She needs special aids for bathing, eating and sleeping.
Quinn’s condition also means she struggles to hold and play with toys and tires out quickly while sitting in her high chair. She also chews her hands leaving them sore and red.
Quinn was diagnosed at 10 months old, after her parents spent months seeing various doctors and specialists. Health visitors first noticed something wasn’t right with her vision when she was around six weeks old, then doctors at Edinburgh’s Sick Kids hospital said she was ‘floppy’ for her age.
At first, scans showed nothing. But later on, more tests found it to be a neurological condition. Teri, 35, said the family felt in the dark when they first found out, but she feels lucky that they were able to get an early diagnosis.
She said: “Quinn is such a beautiful, cheeky and happy wee girl who is very smiley. She’s so funny and her personality really shines through. She was 10 months old when she was first diagnosed. Because it’s only a very recently discovered condition there wasn’t much information out there. I remember getting the call to tell us. It was really difficult to take in. But we’re in touch with other families on social media. And we feel lucky in a way that Quinn was diagnosed early on. Sometimes it’s not picked up until much later.”
Teri, who gave up work as a childminder to care for Quinn, says getting help with little things can make a huge difference to her life. Now, thanks to a fundraiser set up by friends, the family is over the moon to be able to buy a special chair that will give her vital support while she rests.
Teri added: "Getting help with everyday things like bathing, which we now have a special chair for, has made a massive difference for us. We rely so much on specialist support equipment. She has a wooden activity room built by dad to help with her sensory development. Quinn even has a sleeping mat with velcro pads that help keep her secure. When she’s not eating or playing she just lies on the sofa. But I can’t leave her there. She could roll off. Her body has to work really hard in the high chair and play area, so she tires quickly. Getting a special support chair will be a place to rest but will still protect her back and neck.
"The hardest thing is we want her to know how much she is loved. That’s not easy, her big sister Orla can't pick her up and play with her. But she sings to her, reads to her and tickles her. Quinn just gets really frustrated because she wants to be able to communicate with us. She might never be able to talk and that’s hard. She will always need us and lots of support, so we are grateful for all the help we have had.”
The Gofundme page, set up by friend Jacqueline Stewart, has raised more than £3,000 so far, having smashed the £600 target. The money will be used to pay for remoulds of the chair so it can support Quinn as she grows and a special play area. A charity is funding some of this chair which costs over £1,300.
Teri said: “I couldn’t ask for better friends and family. People really want to help but don’t always know how. At first I didn’t want to ask for help but my friend told me to put my pride aside for Quinn. I’m so glad she did this for us. This chair will make a huge difference to Quinn and to us as a family. We can also buy her a play arch so she can hang toys on it. It’s so touching. We just can’t thank everyone enough.”