Newly Diagnosed

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 Support

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 

 

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.

 

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 quarterly newsletters.

 

We can also connect you to other families in your region who are on the same journey. 

Parent-chat 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 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

      027 2243924

  • South Island, Christchurch:

      Jeanne Coker, Ph 03 358 5083

Support through Social Media

Please '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)

      (closed group for Kiwis)

  • NZ Angel-mums (closed group for mums/primary caregivers living in NZ)

 

See Social Media

NZ family support - Parent to Parent:

Toll free: 0508 236 236

The Angelman Network Email:

    angelmannetwork@gmail.com 

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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.

The Angelman Network is a

Registered Charitable Trust based in New Zealand

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Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites. Always contact your own medical practitioner for any medical advice.

©2018 by The Angelman Network.