Shailza and Daniel have two beautiful boys just a year apart in age. They smile and giggle and win hearts just like any other 4 and 5 year old but sadly neither Riley nor Stanley is able to sit, walk, talk or even feed properly. Both boys have been diagnosed with a very rare genetic condition involving duplication of an X chromosome which has left them with very poor muscle tone and requiring constant care. The condition is so rare that not even the hospital specialists are able to predict what the future looks like for Riley and Stanley. It is simply a question of taking each day as it comes.
The first lockdown coincided with Riley’s muscle spasms becoming more frequent and intense.
“He was having really bad spasms that made him so stiff,” says his mum, Shailza. “They were happening so often that he was only getting about two and a half hours’ sleep every 24 hours. He would doze off on my lap for about 20 minutes before another spasm woke him. It was awful to see him looking so ill. He was losing weight, exhausted and in pain.”
Riley had been about to begin a trial to try and reduce the spasms, but it ended up being delayed by more than a year because of the pandemic.
“He really suffered during that time,” says Shailza. “He had a spell in Helen and Douglas House to help manage the pain, and the Rennie Grove Children’s Nurses coordinated all that.”
Although Shailza and her family are used to the isolation that comes with caring for children with complex health needs, she says they wouldn’t have got through the lockdowns without the charity’s nurses.
“They liaise with consultants, our GP, they arrange for prescription changes and delivery to us. They speed up the whole process and make sure nothing is missed.
“Sometimes you only have a tiny window of time to sort something out in between feeding, medication, toileting, or sickness, and the Rennie Grove Children’s Nurses completely get that. Sarah has been in our lives forever – Riley was just eight months old when we first met – and she’s known Stanley since he was born. If I need anything at all I can quickly text the team – no small talk needed! I know they’ll call me back as soon as they can and sort out whatever it is we need.”
Shailza and her family shielded during the first lockdown. “We were very cautious as we didn’t know what we were dealing with or how it might affect the boys – especially Stanley, who has respiratory issues. But from September we started having the nurses visit us again – I couldn’t handle it anymore by myself.”
At this point, Stanley was hospitalised for five days with a severe chest infection. “He was so poorly,” recalls Shailza, “dehydrated and being sick constantly.” That hospital stay was harder than usual because of Covid, and the risks and restrictions that came with it.
As well as the nurses’ support throughout lockdowns, remotely or in-person as necessary, the family has more recently been able to benefit from Rennie Grove’s Play Specialist too as restrictions eased.
“That was amazing,” says Shailza, “she brought her box to our house and played stories through a speaker, acting them out with sensory toys and involving the boys in arts and crafts too. Stanley loved it – Riley slept! But it gave me chance to get on with some chores knowing they were safe, relaxed and entertained.”
Shailza and the boys are happy they’re back at school now, and the family is looking forward to doing more again. “I’ve really missed the gym,” admits Shailza, “it’s my one chance to be myself and not just Riley and Stanley’s mum.”
You can read more about Riley and Stanley’s story on the Rennie Grove website.