Hospice
Fundraising
A Sunderland mum has shared how short stays at St Oswald’s Hospice Children and Young Adults Service is giving her “laid-back, super smiley” 11 year old daughter the independence to thrive.
The first time Aoife Howe stayed at St Oswald’s Hospice Children and Young Adults Service was in March 2020 – the day the country went into lockdown.
It was a nerve-racking time for everyone, but particularly for mum, Amy, and dad, Andrew, who were entrusting the care of their beloved daughter to our team.
For the family from Pennywell in Sunderland, the visit marked the furthest distance Aoife had been from her parents.
“She had never been that far from us, but the team did a fantastic job making us comfortable and Aoife feel at home,” Amy revealed.
“I’d worked a bit with St Oswald’s Hospice in my job and so I knew she was in good hands. It was also reassuring that there are always nurses on duty.”
Aoife was born in 2013, and at 3 months old, her parents began to suspect she wasn’t developing as quickly as other babies her age.
“She couldn’t hold her head up and didn’t seem interested in any of her toys,” Amy explained. “Health visitors tried to reassure us by telling us not to compare her with other children as they develop at different rates, but as time went on, nothing was changing.”
After numerous hospital visits and consultations – including trips to Great Ormond Street Hospital in London – Aoife was diagnosed with complex neurological conditions including complex epilepsy and hyperinsulinemic hypoglycemia.
“I don’t like to say I became Aoife’s carer; I became her full-time mum.”
Aoife was placed on multiple medications to try and manage her epilepsy that caused up to 250 seizures a day. She was eventually fitted with a vagus nerve stimulator to control the abnormal electrical activity in her brain.
While this helped, Aoife can still have seizures at any time. She also has a severe visual impairment, is non-verbal and uses a wheelchair.
Now 11, Aoife is a “laid-back, super smiley girl” according to mum.
She attends Sunningdale School in Sunderland and spends 3 nights a month at St Oswald’s Hospice.
The short breaks at our Children and Young Adults Service allow mum and dad the chance to spend quality time together.
Amy also sees the visits as an important opportunity for her daughter to gain some independence.
“I like to think of it as Aoife is having a sleepover, just like other children of her age are doing.”
“She also loves a bit of mischief and has a wicked sense of humour.”
Aoife enjoys a range of activities at St Oswald’s Hospice and has been on trips to the Metrocentre, theatre and hydrotherapy pool.
Her parents and grandparents also enjoy taking part in the family events at the hospice.
“I take my mum to the Christmas party as she likes to see where Aoife stays and where she has all her fun.”
Holly Smith, Matron at St Oswald’s Hospice Children and Young Adults Service added: “We pride ourselves on supporting, not just the child or young adult with progressive life limited conditions, but the whole family including parents, grandparents and siblings.
“It’s a pleasure and a privilege to care for Aoife and the team always love seeing her bright, beaming smile. It’s also brilliant that mum brings grandma to join us for our events where they can feel part our extended St Oswald’s Hospice family.”
Amy goes on to reveal that Aoife’s favourite activity at St Oswald’s Hospice is music therapy.
“She loves all types of music,” mum explained. “Especially jazz. I think it’s the busyness of it. Her favourite instrument to listen to is the guitar.”
The tween also enjoys dancing with her favourite toy snake.
“Aoife’s had the rubber toy since she was small, and she loves it so much we call her the ‘snake lady’.
“When the music is playing, she waves it around so you have to be careful not to get whipped by it!”
Aoife sounds like a sssss-uper Sunderland lass who loves her visits to St Oswald’s Hospice.
Sunderland families like Amy and Aoife’s benefit greatly from the incredible support of St Oswald’s Hospice’s Children and Young Adults Service.
To keep this vital care available, the charity’s shop on Sunderland High Street West plays a key role in raising essential funds and spreading awareness of the Hospice’s services available to local people. If you or someone you know could lend a hand and volunteer in St Oswald’s Hospice’s Sunderland shop, get in touch today.
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