When Ange discovered the AYAH in Manly, it was a relief. Before then, there were no respite services available for adolescents with complex issues. “Until the AYAH, there was nowhere that offered the one-on-one care that Ange needs so as soon as it opened, I booked in for a week’s respite with Ange.” “The staff are truly amazing,” said Niki. “Having qualified nurses and a doctor on duty also gives me so much comfort.” Niki also appreciates all the additional services that are available at the AYAH, such as the occupational therapists, psychiatrists and dieticians. With its “calm atmosphere”, Niki feels that the staff understand Ange and her daily routine and they have everything she needs so her family can avoid hospital visits should she have a major seizure. “The first night we came to the AYAH, they had a twilight session on the balcony and a musician came to sing.” “Ange can’t go out and listen to live music like her friends do, but she got to experience what it would be like and she really enjoyed moving her arms to the music and singing a little.” While at the AYAH, Niki stays in a two-bedroom apartment and can get the respite she needs. “It gives me the opportunity to recharge and a bonus is that I sleep in my own bed.” Niki loves that her family can stay and all have a meal together. She can take the time she needs to go for a walk while the staff watch and care for Ange. Niki trusts that if there are any issues, they will get her straight away. “When she’s scared and I’m not there, they comfort her which is priceless,” said Niki. “Ange hasn’t eaten solids for two years, but the chef at the AYAH took the time to make her a special meal and she loved it.” No matter how complex or severe Ange’s condition gets, Niki is confident that the staff will treat her well. Niki believes that the AYAH has an amazing healthcare team that “feel like family”. Niki said, “the staff even organised a visit from James Tedesco who is the captain of the Sydney Roosters.”
“He gave Ange a signed jersey and she winked at him which made him blush!”
Manly AYAH is a vital service for us and we are so appreciative of the care, compassion and kindness shown by all the staff there.
Niki, mother of AYAH patient
Ange is now 19 years old and progressing towards her life expectancy. She recently had 98 tonic-clonic seizures within two weeks with many lasting up to 15 minutes. “I called everyone in the family because I thought, ‘this is it’,” Niki said. The family has not given up on finding a cure for Ange but in the meantime, Niki and Ange have scheduled more respite visits to the AYAH.
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