“Hannah’s House has helped our family feel less isolated and reminded us that we don’t have to navigate this journey alone,” shares Perth mum, Emma.

Emma’s 6-year-old son Ryan lives with Allan Herndon Dudley Syndrome – an ultra-rare, life-limiting genetic condition that less than 400 people worldwide have been reported as having.

As part of this, Ryan has been diagnosed with cerebral palsy, putting him at high risk of respiratory complications, which has led to countless hospital admissions.

His complex medical needs impact everything he does.

“The support from Hannah’s House has extended far beyond practical care,” explains Emma.

“Having a team who genuinely understands the realities of raising a medically complex child has made an enormous difference to our entire family. We have always felt listened to, respected and supported without judgement.”

School Support Helping the Whole Family

Despite Ryan’s many challenges, it was always important to Emma and her husband, Angus, that Ryan be given the opportunity to attend school independently. 

When they enrolled Ryan in kindy at Carson Street School in 2024, they were introduced to Hannah’s House’s in-school nursing team.

“Ryan required a much higher level of medical support than the teachers, education assistants and school nurse were able to provide,” reveals Emma.

“Hannah’s House was already familiar with the school’s policies and procedures, and they had staff available to support him, which made the transition much easier for our family.

“It also gave me valuable time to focus on Ryan’s two siblings, while also managing the many behind-the-scenes responsibilities that come with caring for a medically complex child; organising therapies and medical appointments, completing paperwork, and following up phone calls and emails.”

Playgroup Making a Difference

Emma describes the Hannah’s House Playgroup as a family lifeline.

“It’s one of the few places where Ryan is not only welcomed but truly understood,” she states.

“The Play specialist, Sue, consistently goes above and beyond to adapt activities to suit every child’s individual needs and always makes an effort to include siblings as well, which helps the whole family feel supported.

“Knowing there are people who truly advocate for inclusion and believe every child deserves the opportunity to participate has meant more to us than words can express.”

Emma’s whole family also regularly attends Hannah’s House’s thoughtfully planned special events.

“These, we all genuinely look forward to as they provide opportunities and experiences for our children in a safe, inclusive environment that otherwise may not have been accessible to us,” she discloses.

“Playgroup is not just valuable for the children either — it’s incredibly important for parents and carers too. It creates a space to connect with others, share advice and experiences, and simply take a moment to breathe alongside people who truly understand the challenges of raising a medically complex child.