A boy from Lincolnshire will be marking his 14th birthday with a David Bowie themed party to raise money for The Sick Children’s Trust, the charity that supported his parents by providing a ‘Home from Home’ whilst their son received life-saving treatment at Sheffield Children’s Hospital last year.
Limber resident Sonny Tindall, who is autistic, non-verbal, and has epilepsy, was initially admitted to Grimsby Hospital with an eye complaint potentially connected to foxglove poisoning. However, his rapidly worsening condition and dramatic weight-loss led to a referral to Sheffield Children’s Hospital, some 60 miles away from their home, for specialist treatment.
“Sonny has been poorly pretty much since the day he was born, but this was the moment where we were faced with the possibility that he might die”, said mum Marie Tindall, 46. “It was horrendous, and frightening. We thought we were going to lose him.”
A year earlier, in 2020, Sonny was diagnosed with homocystinuria (HCU), a rare and serious genetic condition that disrupts the body’s ability to break down food protein, causing a build-up of harmful substances. The condition, which has left Sonny partially sighted, was a significant factor in Sonny’s dramatic deterioration, resulting in a trio of operations during September and October 2021.
“As Sonny is non-verbal it was a challenge to find out how he was feeling – he couldn’t tell us which part of his body was hurting him”, continued Marie. “It turned out that the HCU was really affecting his eyes and he needed two operations to relieve the pressure that was building up. Also, the amount of weight he had lost was incredible. It was like the autism had made him anorexic, so he needed a feeding peg to be fitted so we could get some special milk into his body as he had completely stopped eating.”
“The Covid-19 rules in place at the time permitted only one parent to be present on the ward. However, with Sonny being so difficult to handle due to his various conditions, they allowed both myself and Mike, my husband and Sonny’s dad, to be there to help so that a nurse wouldn’t have been taken completely away from their job for the entire time we were in.”
Determined to stay by their son’s hospital bedside throughout the ordeal, Marie and Mike tried to snatch periods of sleep on a small plastic sofa on the ward. With neither parent getting any genuine rest, it was not long before the fatigue really took hold.
After six days of sleep deprivation, a wonderful nurse called Amy told Marie and Mike about The Sick Children’s Trust charity and their Treetop House ‘Home from Home’, located just minutes away from the ward.
“She could see that we were absolutely shattered and really needed help, so she put in a call, and within an hour, we had a room”, said Marie. “It was a complete game changer, as we could take it in turns to get some rest and properly look after ourselves, which would allow us to stay completely focussed on helping Sonny.
“The chance to sleep in a proper bed made a huge difference. At Treetop House I got my first decent sleep for what felt like weeks, which helped me no end. By that stage we knew that Sonny would eventually be coming home, and it would have been an incredibly tough situation for us to manage if we were completely exhausted. Treetop House gave us the chance to rest and recuperate ahead of discharge, and we cannot thank them enough for that.”
As well as the chance to get some much-needed sleep, Marie and Mike also found themselves greatly appreciating the chance to wash clothes, have a warm shower and cook a healthy meal.
“Even something as simple as being able to cook, which you can take for granted, helped us so much. I would eat before heading to the ward and switching with Mike, who would then head back to Treetop House to eat his dinner. Even the chance to have a nice warm shower made us both feel more human, helping us to focus on the challenges we faced every day at the hospital. The support provided by Treetop House helped us immensely, not just emotionally and physically but also financially, being completely free of charge. It was simply fantastic, and we cannot thank them enough.”
Upon being discharged in October 2021, Sonny returned to his home in Lincolnshire and is making excellent progress.
“He’s doing great, putting on weight and smiling again”, said Marie. “He always smiles. He is one of the happiest, smiliest kids you could ever wish to meet, which is one of the only ways we can tell if he is well or not. If he’s not smiling, we know he’s poorly. When he is smiling, nurses fall in love with him left, right and centre!”
Regarding his Bowie-themed 14th birthday party, Marie admits that it is a milestone many thought he might never reach and therefore should be celebrated in the best way possible.
“It’s going to be a big party! We are so thankful that he has got to 14th birthday, and we want to raise money for The Sick Children’s Trust as a way of saying thank you. Sonny is a huge Bowie fan. He loves him, which is largely down to me! We thought it would be a great idea to get friends and family to dress up as Bowie characters. Everyone is very excited – there are loads to choose from, but we expect a lot to come dressed as Ziggy Stardust!”