It's our turn to give back!
The Hayman's have supported our community so much, now let us unite and give back to them, and support Lilah.
Taranaki
Daryl and Ashley's daughter and Wyatt's sister Lilah was diagnosed with the extremely rare Phelan-McDermid syndrome in February 2025. After many appointments and information seeking, Phelan-McDermid syndrome requires input from a range of specialists, over Lilah's life. Sadly the intervention she needs, such as speech, physical therapy, occupational therapy, support workers, nutritionists and schooling support is not something New Zealand can provide.
The Hayman's have been given an overwhelming opportunity in Australia for Lilah to attend a school where there is a student with the same condition, and where Lilah can receive the care she needs.
This has been an extremely hard, emotional and heart-numbing journey for the Hayman's; their world has turned upside down. They have a lot of fears going forward for her future and also hope with what Australia can provide.
They will be going to Australia to set everything up in June, and then moving there.
This is our opportunity to give back to a family who has given so much, particularly to the Jiu Jitsu community, with Daryl helping students of all ages, over decades of dedication. He has given his time purely for the enjoyment he gets, and Ashley has supported Daryl so that he can give to us all.
Angela McGregor's involvement (page creator)
My children are members of Oni Jiu Jitsu, and I have seen the generosity Daryl and Ashley have given.
Use of funds
Funds will be spent on preparing their house for sale, moving to Australia, and all the support Lilah will need before they leave.
Other page links
Latest update
Update 30 April 2025
Wow team, we are actually blown away. Thank you everyone, from the bottom of our hearts. We just wanted to provide some details about Lilahs condition. Phelan McDermid Syndrome is a Chromosome deletion on the 22nd chromosome on the 13th segment. Her deletion is approximately 1.7MB, Deletions range from 25KB up to 9MB. There is no cure for Lilahs condition and is managed with supportive care. There is a very strong possibility that she will never live independently and only 18% of people diagnosed have ever gained Speech, which is why moving is so important to us and accessing Daily speech therapy, we will also be learning sign language so Lilah has some form of communication.
More details on Lilahs condition as below:
Symptoms of Phelan-McDermid syndrome vary from person to person. Not all children will have every symptom. Common symptoms may include:
Neurological and neurodevelopmental problems, including:
• Developmental and speech delays
• Autism spectrum disorder
• Intellectual disability
• Behavioral problems
• Seizures
• Brain cysts
• Trouble sleeping
• Low muscle tone
• Regression
• Brain Cysts
Cardiac problems, including:
• Structural heart defects
Gastrointestinal problems, including:
• Constipation
• Gastroesophageal reflux
• Poor feeding
Kidney problems, including:
• Vesicoureteral reflux
• Hydronephrosis
• Renal cysts
• Renal hypoplasia or agenesis
Susceptibility to infections, including:
• Recurring ear infections
• Upper respiratory tract infections
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