Receiving a diagnoses of Angelman syndrome (AS) for your loved one will usually trigger a range of deep emotional responses. It is a lot to take in. There will be emotional adjustments to be made while also absorbing all the new information about the syndrome and the implications thereof. But knowledge is key to providing the best treatments. Try to stay calm and give yourself time to process the news at your own pace. Information on this website will help you become better acquainted with a 21st Century version of Angelman syndrome as you adjust to the diagnoses and your ‘new normal’. Your life will change, but there are supports along the way. Continue to celebrate your child.
Points to Note
Every child (including those born with Angelman syndrome) is an integrated unity of the biological and the personal, the natural and the social, the inherited and what we acquire during our life.
The affected chromosome region for Angelman syndrome is only one small part of the child's total genetic makeup.
Each child is an individual with a unique appearance, personality and set of abilities.
Just like any other child, they will have their own challenges and weaknesses, strengths and talents.
While people who have Angelman syndrome may have some clinical features in common, any one person will only have some of the characteristics attributed to the syndrome.
Children who have AS will also closely resemble their parents and family.
The focus of The Angelman Network is to connect and share information
We do not have all the answers to all the questions but we aim to create a global
network that generously shares and connects families and specialists from around
the world. It can be quick and easy to source relevant and up-to-date information
via links on our website. Explore our website and get to know more about how you
and your family can develop your own personal strategies to equip yourselves for
this unique journey.
A mother of a child with a rare syndrome, shares her story here: Every Day, We choose Joy
Medical resources and guidelines tend to present a very limited view of Angelman syndrome because the primary role of the medical fraternity is to focus on the more severe aspects of any condition and the treatments thereof. Because their job is to treat the worst cases, medical specialists may unintentionally make the condition sound more severe than it is. Some parents have come away feeling traumatised after being informed that their child has Angelman syndrome, and that (according to medical resources that are often outdated) their child may never talk or walk. Most children with Angelman syndrome do eventually learn to walk - though some take longer than others to get started. Some learn several words and many learn to use AAC to communicate. See Communication.
At diagnoses, your medical specialists should inform you about some of the potential risks and health problems your child could face. Practical information around how to deal with aspiration, reflux and seizures can help to remove the stress of uncertainty and better prepare you, should an emergency arise in the future. You should then be referred to a social worker, disability network or NASC in your area that will begin to put supports in place for your child and your family.
Helpful links for Information in NZ
Ministry of Health: Disability services - The Ministry’s aim is that disabled people and their families are supported to live the lives they choose. This section includes information on the role of Disability Support Services (DSS), the disability support services they fund, current projects and programmes, and information for those contracting with them.
Disability Connect - Sign up to this Disability Information Advisory Service. There are lots of ways they can help individuals with a disability or family members of a disabled person, to navigate the New Zealand disability sector.
Parent to Parent - Raising a child with a disability is an experience that isn’t planned. They will inform, educate, inspire and support you as you navigate your way through your family’s experience with disability. Services are free and confidential.
Kids Health - For more information about the disability services that can support you and your child
Angelman Syndrome around the World
There are many Angelman organisations in countries around the world, led by motivated and pro-active parents. These organisations also have informative websites. Some organisations are specifically focused on collectively driving new research into the 21st century and striving for better medical interventions and therapies, while also redefining this rare condition. A list of organisations from around the world can be found here
We have a very pro-active and supportive global AS community. Thousands of families worldwide, some with much older children with AS, are connected via social media, and can offer practical advice and emotional support. Read more…
We also celebrate our very own International Angelman Day!! Read more here.
The Angelman Network Support
Send us an email with your contact details and postal address and we will send you an Info Pack that will be useful to share with other family members, carers and specialists.
The Angelman Network encourages and organizes regional gatherings for families around NZ. Look out for announcements on our Facebook Page and/or sign up on our website, to receive our quarterly newsletters.
We can also connect you to other families in your region who are on the same journey.
A sense of isolation and anxiety is common after diagnoses, however you are not alone.
If you live in New Zealand and wish to meet with or talk to someone about your situation and/or Angelman syndrome, you can call any one of our parent representatives:
North Island (top), Auckland:
Sivao Winther, Ph 09 813 5194
North Island (bottom), Manawatu:
Kathryn Cherrie, Ph 06 3267332 or
South Island, Christchurch:
Jeanne Coker, Ph 03 358 5083
Support through Social Media
Please 'like' our official Facebook page
Join our Facebook support groups here:
(international closed group)
NZ Angel-mums (closed group for mums/primary caregivers living in NZ)
See Social Media
A Holistic View
As a parent or family member, you will gather a more holistic view of the wide spectrum of this condition by connecting with other families in real life or on social media.
It is unlikely your specialists will know about the best case scenarios – the children with Angelman syndrome who do walk, and run, and ski; or those that do have a few words; or the many who are now learning to use AAC competently – to speak, read and write.
Always presume competence for your child, keep your dreams alive, explore their strengths and help them build on their weaknesses. Most importantly, never give up hope that they will live a fulfilled life. For family and friends, there is also much personal
growth to be gained on this journey.