Asher’s Story – A Mother’s Courage, A Community of Care
Before Asher was even three months old, Sian found herself on a journey no parent expects, one that would test her strength and lead her to a place of safety and support at Little Lights Liverpool.
At just 11 weeks old, she noticed something wasn’t right.
Asher wasn’t feeding properly. He kept falling asleep while breastfeeding. Something in her knew she had to act.
A doctor heard a slight heart murmur and referred them on, but before they could even process that news, a midwife noticed Asher’s lips were turning blue. His breathing wasn’t normal.
“You need to go to A&E. Now.”
When Asher was just 11 weeks old, Sian found herself facing a situation no parent could ever prepare for.
After being told to take her baby to A&E immediately, everything changed in an instant. What followed was a whirlwind of hospital admissions, specialist teams, and uncertainty as doctors worked to understand what was making Asher so unwell.
“I just held it together,” Sian remembers. “We kept asking, ‘Is Asher okay?’ and nobody knew what to tell us.”
A Challenging Start
After being transferred into specialist care, Asher was diagnosed with Truncus Arteriosus, a rare and serious congenital heart condition.
His tiny body was working incredibly hard, and doctors discovered that blood was flooding his lungs. He was critically ill and not strong enough for the major surgery he urgently needed.
Over the months that followed, Asher faced a series of complex medical challenges. He underwent major heart surgery, spent time in intensive care, required additional stomach surgery, and relied on life-support treatments as doctors worked around the clock to save his life.
In total, Asher spent 100 days at Alder Hey Children’s Hospital, much of that time in intensive care.
Eventually, after months of treatment, he became well enough to leave hospital and return home with his family.
More Obstacles to Overcome
While returning home was a milestone, Asher’s medical journey was far from over.
He continued to experience serious health complications, leading to multiple emergency admissions and further time in intensive care. He was later transferred to Great Ormond Street Hospital for specialist treatment.
Following a severe episode of sepsis, Asher suffered a second stroke. Doctors told Sian that he had developed cerebral palsy and epilepsy, and explained that his future development could be significantly affected.
“It felt like we had been knocked down all over again,” Sian says.
Like many parents navigating complex diagnoses, Sian found herself constantly adapting to new information while advocating for her son every step of the way.
A Little Boy Full of Fight
Despite everything he has faced, Asher continues to surprise those around him.
Today, he uses an NG tube for feeding and medication, and continues to attend therapy appointments. With ongoing physiotherapy and support, he has achieved milestones that once felt uncertain.
Sitting independently. Reaching for toys. Playing. Interacting with the people around him.
For Sian, these moments carry enormous significance.
“Now we celebrate everything. The little things mean so much more.”
Every achievement, no matter how small, is a reminder of how far Asher has come.
Finding Support at Little Lights Liverpool
By April 2024, years of hospital stays, appointments and constant worry had left Sian physically and emotionally exhausted.
It was then that she was introduced to Little Lights Liverpool Baby Hospice.
At first, the idea of a hospice felt overwhelming. But after meeting the team, her concerns quickly began to ease.
“The thing that comforted me most was that they’re nurses, qualified nurses. The more I got to know them, the more it felt like home.”
Today, Little Lights has become an important part of Asher’s routine.
During his visits, he receives support with his care needs, enjoys time in the sensory room, hydrotherapy sessions, soft play activities, crafts and music. The team understand his medical needs while giving him opportunities to play, explore and simply enjoy being a child.
A Place to Rest and Recharge
The support Little Lights provides extends far beyond medical care.
For Sian, it offers something equally important: the opportunity to rest.
Knowing Asher is being cared for by experienced professionals allows her to step back, recharge, and take care of her own wellbeing.
“I trust the nurses. I feel confident. I can sleep. I can breathe.”
She has also found comfort in the relationships she has built with staff, volunteers and other families who understand the realities of caring for a child with complex medical needs.
A Second Home
Over time, Little Lights has become much more than a place for respite care.
When the team celebrated Asher’s second birthday with balloons, banners and party hats, Sian was overwhelmed by the kindness shown to her family.
“I walked in and cried. This is like my family.”
Today, she describes Little Lights as her village, a place where Asher is known by name, celebrated for who he is, and supported to reach his full potential.
“You feel normal here. It’s my second home. I can trust them with Asher, and that’s a big thing for me to say.”
For Sian, that trust has made all the difference. And for Asher, it means having a place where he can continue to grow, play and thrive, surrounded by people who care deeply about him and his future.
“It’s the best thing ever,” Sian says. “Because you’ve got that support. You’ve got that family that know.”