Extraordinary Owynn

Hear from hospital Mum Chelsea about her son's diagnosis with a rare condition and how your donations have helped support their family.

'My son Owynn was born in May 2021 and was admitted immediately to the NICU in respiratory distress.'

'His condition deteriorated overnight and he was transferred from the Royal Alexandra Hospital to the Glasgow Royal Hospital for Children the next morning.'

'Once there he was sedated and put on a ventilator to help his lungs heal whilst doctors tried to discover the source of his infection.'

'After a week and a half on the unit he begun to improve and was moved off the vent and eventually transferred back to the RAH NICU.' 

'Following his discharge home at two and a half weeks old, Owynn was monitored by the Neonatal clinic as an outpatient to keep track of his development.'

'By the time he was seven months old, we realised his gross motor development was delayed.'

'He didn’t sit on his own until nearly 9 months, didn’t crawl until after his first birthday, and by the age of two he still showed no signs of independent walking.'

chelsea, owynn's mum

'His speech development was also very behind his peers. These developmental delays encouraged his neonatal consultant to run a host of investigative tests to try and determine the cause of the challenges Owynn was experiencing.'

'He had bloods taken to check various levels and run a genetics test, was sent for an MRI, and was referred to physio and speech and language therapy.' 

'We didn’t have a lot of preconceived notions as to what the cause of Owynn’s delays was.'

'When we got the genetics results from his consultant, we were shocked.'

chelsea, owynn's mum

'He was diagnosed with 48,XXYY Syndrome, a neurodevelopmental disorder that affects 1 in 50,000 boys born worldwide.'

'Some of the common symptoms are the developmental delays Owynn had been experiencing, the hypermobility and low muscle tone he has, and the frequency with which he experiences respiratory infections.'

'The hardest part of this entire diagnosis is the unknown element of it.'

chelsea, owynn's mum

'He isn’t overly negatively affected at the moment, but everything we have read about boys with XXYY as they age indicates future further health concerns and greater impacting intellectual and physical disabilities.'

'Already we are attending many appointments across several different specialties (endocrinology, cardiology, genetics, neurology, audiology, nephrology) to get baselines and check for any possible early signs of common issues XXYY boys experience.'

'We are so grateful for the level of care we have received from the Royal Hospital for Children teams since Owynn was born, and since his diagnosis.'

'There may be a lot of uncertainty about the future, but I am sure that we will be well supported to get the care and preventative checks Owynn needs to live his best life as an eXtraordinarY kiddo!'

chelsea, owynn's mum

How your donations help

'One of the most memorable things from Owynn’s NICU stay was the Little Inky Feet kits provided by Glasgow Children's Hospital Charity that were given to us so that we could capture his little footprints.'

'It was a very emotional and meaningful memento of an incredibly difficult time.'

Chelsea, Owynn's Mum

'The charity also fully-fund the Office of Rare Conditions, the only service of it's kind in Scotland who support families like ours who have rare genetic diagnoses.'

'After benefitting from these charity services, I decided to do some fundraising to help  ensure that other families experience the same level of care that we did.'

For her birthday this year, Chelsea has asked for donations to Glasgow Children's Hospital Charity. She has raised over £90 so far through her birthday fundraiser on Facebook. 

Flying high

'Owynn attends a parent and child circus class at Community Circus Paisley, which is an organisation that is wonderfully inclusive and accommodating of kiddos with any additional support needs.'

'Circus class has absolutely helped to challenge him physically and give him a sense of accomplishment within his current abilities.'

'He has a naturally strong grip and can hang from the trapeze bar and pick his knees up and down for ages.'

'He's also gone from refusing to stand on the tight wire, to now walking the whole length of it with support!'

Keep flying high, Owynn!