Supporting Wolf Hirschhorn Syndrome Families

Supporting Wolf Hirschhorn Syndrome Families

What is WHS?

What is Wolf Hirschhorn Syndrome?

 

Here is a brief overview of some of the differences in bodily make-up of a person with Wolf Hirschhorn Syndrome (WHS).

Fortunately now there are many resources online giving detailed medical information of the features of WHS, its diagnosis and management so we won’t attempt to deliver the same here.

Because of the absence of a portion of the DNA blueprint in chromosome 4, this results in impaired development in the major systems of the foetus in utero. Distinctive facial features are apparent at birth being very wide-set eyes, a hooked nose, small mouth and lower portion of the face, small head and sometimes a cleft lip and/or palate. Growth and development in all areas may be slow and low muscle tone in combination with other elements creates difficulties with mobility. Some of the individuals may not be able to walk or establish truncal support over their lifetime whereas others with WHS may walk unassisted.

Epilepsy is a common feature, as are feeding difficulties, bowel and digestive problems, cardiac defects, and sometimes decreased immunity. The extent of these problems vary according to the way in which the 4th chromosome was affected in the beginning so each child with WHS presents with a unique physical make-up, as do we all.

Socialisation skills are usually strong, however communication may require assistance with speaking devices or sign language.

The information that is shared in online support groups between families and carers who have observed and cared for someone with WHS delivers useful practical advice about the ways in which they have supported the specific needs arising from these changes, For example parents might share information about food preparation since babies and children with WHS can find it hard to chew or swallow regular food. Advice about their child’s sleep patterns, behavioural issues, stages of walking development and other insights helps new parents to fathom their child’s unexampled progress through life.

Additionally the expertise offered by health practitioners, physiotherapists, occupational therapists, speech therapists, support workers, and many others provide an excellent support network in expanding the base of care beyond the family.

It can be reassuring to know that it is possible for a child or adult to live with the diagnosis of Wolf Hirschhorn Syndrome and have a life filled with meaning and purpose.

 

This map of Australia shows where most of our WHS families are located.

Our Stories

Feel their struggle and know their joy.

 

There’s no entry fee, no invitations are issued and joining up is unanticipated but every year around the world new members of the Wolf Hirschhorn Club are born.

In Australia the diagnosis of Wolf Hirschhorn Syndrome links a relatively small group of families together. Some children are in their first year, other adults are in their fourth decade. All states (except perhaps the ACT) are home to someone with WHS.

The genetic blueprint of WHS creates similarities in facial appearance, body make-up and challenges that give these children and young adults a common bond but going well-beyond that are the unique and beautiful personalities which make them who they are in their own right.

We would like to share as many stories as we can. Families, please feel welcome to share the story of your child. Tell us about their wonderful spirit and what they mean to you.

Visitors, please enjoy the stories as we introduce you to these fabulous people around Australia.

 

Other charities in Australia who support families with WHS

4P Aussie Kidz – Helping Children With Wolf Hirschhorn

Steve Waugh Foundation – Rare Disease Foundation Australia