Since opening in 2023, the Adolescent and Young Adult Hospice (AYAH) in Manly has become a crucial support for young people aged 16 to 30 facing life-limiting illnesses and their families. For Morgan, a nineteen-year-old living with congenital muscular dystrophy, AYAH has provided a safe space, offering specialised care, respite, and a much-needed opportunity for his family to reconnect and recharge.
AYAH’s specialised care
Morgan with his dad Anthony
Morgan was born with congenital muscular dystrophy and suffers from low muscle tone. He lives in a wheelchair and is dependent on his family for everything. Morgan’s care is complex and involves many different healthcare areas to manage his everyday needs.
AYAH is well-known to Morgan and his family as a welcoming and comfortable place to go when they need some respite. “AYAH is a safe place where the people speak your language,” said Morgan’s father Anthony.
Anthony is impressed by the healthcare staff always wanting to excel at the specialised care services they offer at AYAH. He is so confident in the care AYAH provides Morgan that he was able to take his wife Jen away for a short break last year – the first time he’s been able to do so in 15 years.
Besides giving a shout-out to the “pretty special” music therapist Dave and the way he shares his love of music, Morgan says that he really likes the food prepared by Phil the chef. “He makes my belly nice and full,” said Morgan, “and he prepares the margarita pizza just the way I like it.” Morgan has a chance to catch up with friends at AYAH and also says the staff are super kind and funny and talk to you like a young person.
“It’s always a pleasure to have Morgan and his family spend time bonding as a family and offering his family the respite they so deserve,” said Dave.
Connecting as a family at AYAH
Morgan’s family
Morgan’s family, including his parents, two brothers, and their two beloved dogs, Kevin and Wynyard, enjoy the comfort of AYAH. They stay in the family accommodation unit while Morgan receives expert care in his own self-contained room.
The tranquil setting of AYAH, nestled among national parks on the picturesque North Head headland and just a short distance from the beach, provides a peaceful escape for the family. They cherish the chance to unwind in such a beautiful location.
The AYAH team goes above and beyond to make Morgan and his family feel truly cared for. Recently, they delighted the family by surprising them with complimentary tickets to see Morgan’s favourite international stand-up comedian, Gabriel “Fluffy” Iglesias, during his tour.
For Morgan’s parents, Anthony and Jen, AYAH is more than a care facility – it’s a place where they can relax and “chill out” together as a family or connect with other parents who understand the unique challenges of raising a child with a disability. The combination of dedicated care and community support creates an invaluable sense of belonging for their family.
Morgan’s dream career
Despite his struggles, Morgan’s passion is to counsel young people who live with a disability as he understands their experience and the mental health challenges they face.
Anthony explains that Morgan is quite academic. While they considered sending Morgan to a special support education unit, they were pleased he was accepted into a mainstream school. His teacher’s aide has been with him since kindergarten, and Anthony says their life has been made better by knowing her.
A downside for Morgan is that he sometimes can’t relate to his peers at school. Where he must live with the challenges he was born with, he believes his school friends worry about “silly things”. With so much of his life being outside of his control, Morgan likes to explore existentialism, which provides him great comfort in determining life’s meaning.
Morgan aimed to finish his HSC this year however he suffered some significant health issues that prevented him from attending school for a considerable amount of time. But Morgan has not given up on attending university and has signed up for TAFE as a pathway to a Bachelor of Arts to study psychology and philosophy. He is also looking forward to immersing himself in the sanctuary of the libraries on campus.
Anthony is incredibly proud of his family who live by the mantra “be the best you can be” and how they have adapted to Morgan’s needs, while also creating an optimistic environment where they all thrive.
When Anthony thinks back to the day Morgan was born, it was a start of a whole new journey – his family has gone on a totally different path to what they were expecting with the arrival of their son. But he says if their life went the way he thought, they wouldn’t have met a lot of wonderful people, including the therapists, carers and staff at AYAH.
If you would like to support AYAH, please donate here.
