NEWLY DIAGNOSED
Receiving a diagnosis of Angelman Syndrome (AS) can be overwhelming. There is a lot to process, and it’s natural to experience a range of emotions. However, with the right support and information, you can navigate this journey with confidence.
For families in Aotearoa New Zealand, The Angelman Network is the country’s dedicated support organization for Angelman syndrome. This website provides helpful links to articles, blogs, YouTube videos, and Facebook groups offering advice and support 24/7.
Being a good parent and caregiver to a child with extra needs can be tough, so remember to take good care of yourself too. We are here to connect you with local support groups, and emphasize the importance of early intervention therapies.
DIAGNOSES
Receiving a diagnosis of Angelman syndrome (AS) for your loved one can bring up many emotions. There will be adjustments to make as you learn about the syndrome and its implications. However, knowledge is important for providing the best care.
Take your time to process the news at your own pace. The information on this website can help you understand the latest on Angelman syndrome as you adjust to your new normal. While your life will change, support is available.
Continue to celebrate your unique child. Just like any other child, they will have their own challenges, strengths and talents. A mother of a child with a rare syndrome, shares her story here: Every Day, We choose Joy
CONNECT & SHARE
The Angelman Network
does not have all the answers to all the questions, but we aim to draw from our global network; one that generously shares and connects families and specialists from around the world.
Take time to 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.
It can be quick and easy to source up-to-date information via the links on our website.
See info about:
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 AS 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.
While those with AS may have some clinical features in common, any one person will only have some of the characteristics attributed to the syndrome.
Children with AS will also closely resemble their parents and family.
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 medical specialists will know about the best case scenarios – the children with Angelman syndrome who run, jump and ski; or those that do have a few words; or the many who are now learning to use AAC to communicate, 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 and many life-long friendships to be gained on this journey.
In Māori culture, disability is often viewed through a holistic lens, emphasizing the interconnectedness of physical, mental, and spiritual well-being. Māori perspectives focus on the concept of whānau (family) and hapū (sub-tribe), where the individual’s health and disability are seen as part of a collective responsibility, rather than something to be isolated or stigmatized.
Disability is not seen as something inherently negative but as part of the natural diversity of human experience. The Māori worldview, guided by the principles of tikanga (customs) and whakawhanaungatanga (building relationships), stresses the importance of inclusion, respect, and support for individuals with disabilities within the community.
Additionally, Māori concepts of hauora (health) extend beyond the physical to include emotional, mental, and spiritual aspects. A person with a disability is often supported to grow within their environment, with whānau and community playing a key role in fostering inclusion and ensuring that their needs are met.
Te Whare Tapa Whā, a model developed by Māori health expert Sir Mason Durie, further reinforces this perspective by describing health as a balance between four key elements: taha tinana (physical health), taha hinengaro (mental health), taha whānau (family health), and taha wairua (spiritual health). This model encourages a comprehensive approach to disability, considering all aspects of a person’s life.
The Angelman Network Support
Send us an email with your contact details and postal address and we will post an Info Pack that will be useful to have and to share with other family members, carers and specialists.
Contact: angelmannetwork@gmail.com
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 regular newsletters.
We can also connect you to other families in your region who are on the same journey.
Parent-to-parent
Support
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 contact a parent through:
PARENT TO PARENT: support and connect all families of disabled people throughout Aotearoa
Toll free: 0508 236 236
Support through Social Media
Follow or 'like' our official Facebook page
The Angelman Network so you can stay in touch with our news articles and updates.
Join our Facebook support groups here:
(international closed group)
-
NZ Angel-mums (closed group for mums/primary caregivers living in NZ)
See Social Media
Medical Support
Medical resources and guidelines present a limited view of Angelman syndrome. The primary role of the medical fraternity is to focus on more severe health aspects & treatments of any condition. Because they tend to treat the worst cases, medical specialists may unintentionally make the condition sound more severe than it is.
Some parents come away traumatised after being informed that their child has Angelman syndrome, and 'may never talk or walk'. Most children with Angelman syndrome do eventually learn to walk - though they tend to take longer to get started. Some may even run, jump, ski, etc. Some learn several words/sounds, and many learn to use AAC to communicate.
At diagnoses, your medical specialist should provide practical information on how to deal with aspiration, reflux and seizures. This can help to remove the stress of uncertainty and prepare you for a potential emergency, should it happen sometime in the future.
You should then be referred to a social worker, disability network or NASC in your region, who will carry out a needs assessment and begin to put supports in place for your child and your family. For clinical support, see Medical.
Disability Info in NZ
Whaikaha - Ministry of Disabled People, a new government department to work across government to improve outcomes for disabled people in New Zealand.
Disability Support Services (now under MSD), provides information for disabled people/whānau/support people/providers.
Disability – Children and Adults NASC Services. NASC agencies work with children & adults (entering the service under the age of 65) with permanent disabilities to help identify their needs and connect with disability support services.
Disability Connect - They can help individuals with a disability, or family members of a disabled person, to navigate the New Zealand disability sector.
FirstPort - A comprehensive website for disability information and advice from across Aotearoa New Zealand.
Kids Health - For more information about the disability services that can support you and your child.
Angelman Syndrome around the World
There are Angelman organisations in many countries around the world, led by very motivated and pro-active parents.
These organisations also have informative websites. A list of organisations from around the world can be found here.
While some AS organisations are support-focussed, others are specifically focused on driving new research into the 21st century.
There are also many collaborative AS entities worldwide that are striving for better medical interventions and therapies, while also redefining this rare condition. This agressive quest for treatment for AS gives all families much hope for the future.
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.
We also come together every year on 15th February, to celebrate our very own International Angelman Day!!
Read more here.