The Beckwith Wiedemann Children’s Association provides support for families affected by Beckwith Wiedemann Syndrome. Read more about the association here.
What is Beckwith Wiedemann Syndrome?
Beckwith-Wiedemann Syndrome (BWS) is a rare genetic disorder affecting approximately 1:15,000 children.
Principally it is an overgrowth disorder, with the overgrowth being manifested internally (as in large organs), externally, and combinations of both.
The most common symptoms or characteristics are:
- Macrosomia (large body size)
- Macroglossia (large tongue)
- Visceromegaly (large organs in the abdomen)
- Cancerous tumors (Wilms tumor of the kidneys, hepatoblastoma in the liver, neuroblastoma, rhabdomyosarcoma)
- Omphalocele (large sack-like herniation of the umbilicus)
- Neonatal hypoglycemia (low blood sugars)
- Ear creases and pits and stork bite red birth marks usually on the forehead
The symptoms or indicators of BWS are many and varied. It is virtually unknown for a child to have all of the symptoms, and the symptoms can vary from minor and barely noticeable to major and very noticeable. Not every child exhibits the same symptoms. Symptoms are generally divided into major and minor types. Generally it is accepted that the presence of at least two major and one minor symptom would indicate a diagnosis of BWS.
Once the initial few months are over, the major concern for BWS children is the increased risk of developing cancer in the liver and kidneys. It is therefore critical that a very rigid screening protocol is followed. These tumors, if detected early, are usually easily treated, but untreated for a few weeks or months can be fatal.
The syndrome is very complex, and it is thought that there are many undiagnosed children because symptoms are not overly visible and do not affect the child’s breathing or feeding. The long term prognosis is very good and by puberty most of the children have outgrown the syndrome.
What is the Beckwith Wiedemann Children’s Association?
The Beckwith Wiedemann Children’s Association (BWCANZ) was formed and incorporated in early 2006 after the founders were struggling to get information in New Zealand about the syndrome.
The associations aims and goals are:
• To make contact with families/whanau and medical professionals around New Zealand and Australia
• To obtain and pass on the latest information from around the world about BWS
• To support families/whanau with affected children
• To promote public and professional awareness about BWS and the ongoing risks
• To assist financially (where possible) for treatments/travel
• To create a NZ database of affected children and adults
How is the Beckwith Wiedemann Children’s Association funded?
The association has no government funding and relies on the generosity of the public, or community grants. We really struggle to get grants as we ‘do not benefit’ a big percentage of the population.
How can I get help from the Beckwith Wiedemann Children’s Association?
You can contact the association via:
Phone: 03 3225464
Post: BWCANZ, PO Box 37-344, Halswell, Christchurch
How much does it cost?
The BWCANZ provides a free service and has a number of free resources available including a DVD featuring experts and families affected by Beckwith Wiedemann Syndrome.
How can you help?
BWCANZ are always in need of funding to assist families and to obtain and distribute the latest information. If you would like to make a donation you can email the association for details.
Links to Useful Websites
The Beckwith Wiedemann Children’s Association of New Zealand website
The Official Beckwith Wiedemann Syndrome site in the United States
Beckwith-Wiedemann Syndrome Family Forum
Article Beckwith Wiedemann Children’s Association written by the Kiwi Families team