Prader-Willi Syndrome (PWS) is a rare genetic disorder caused as a result to damage on Chromosome 15. People with this condition have various challenges including being physically weak, tenuous emotional control, social difficulties and cognitive impairment. However it is most commonly known for causing individuals to have an insatiable appetite and drive to eat.
Most adults with Prader-Willi Syndrome (PWS) cannot live on their own or in a home without their family or a carer to make sure that they don’t overeat. They also sometimes have volatile or unpredictable meltdowns. There are cases of adults with PWS living alone or with very little assistance but it’s not the norm and in most cases not the best or safest solution.
Today we share a story from Liezl about the first home for PWS adults in South Africa that she started this year in February:
May being the month of PWS awareness worldwide prompted me to share a little bit of our story as a family who refused to give up on a dream until it was done.
What a journey it has been in partnership with the Henri Warnich Foundation (HWF). After seven years of much planning, frustration, staying brave in the face of adversary, fund raising, tremendous support from family, friends and strangers the doors of ‘Huis Henri’ opened on 1 February 2019. ‘Huis Henri’ is the first home exclusively for adults with Prader-Willi Syndrome and we are situated in the heart of South Africa in a little Karoo town called Beaufort West. The HWF are extremely grateful to everyone who joined hands with us to realize this dream, this is not something one achieves alone. Nelson Mandela once said: “It only seems impossible until it is done”. I have learned this to be so true!
It is one thing to open the doors, but it is a whole different challenge to keep the doors open.’ Huis Henri’ is entirely privately funded by donations from people who buy into the vision we have. The Henri Warnich Foundation is a registered NPO and can give out a SARS certificate to anyone who makes a donation. Government is not interested in supporting us as we do not have the numbers to validate their involvement. This is one of the myths of PWS that we would like to blow out of the water. Even though PWS is a rare disease and we do not have the numbers on our side, the challenges are still the same and very real to any parent with a PWS child.
The aim of Huis Henri is to create a safe and supporting environment for our adult children to thrive in. At the moment Huis Henri has two residents Li Deegan and my son Ruan Burger. We have space available for another resident. Li and Ruan have a full day planned for them that involves exercise like swimming in an indoor heated pool, horse riding, walking and gym sessions with an instructor in the mornings. In the afternoons they participate in a workshop where they make fridge magnets from beer bottle lids and also crochet blankets that will donated to children in need in the Beaufort-West Community. Our children know that they are different, but this does not mean that they have nothing to offer. The basic need that we all have is to be appreciated and to make a contribution that will be recognized. Our children are no different, ‘Huis Henri’ is still in its infant shoes, but we are committed to support our adult children with PWS to be the best version of themselves.
Food is locked away and carefully planned meals are served. My son Ruan needs to loose a lot of weight. I’m so proud that he has lost 11kg since February. This is the result of a combination of things like personnel that care, food that is managed and locked away and a well-planned exercise program. We still have a lot to learn, but we are enthusiastic about the future and committed to grow with ‘Huis Henri’ and support the residents.
We at the Henri Warnich Foundation would like to invite everyone with a child, family member or friend who is born with PWS to get involved in ‘Huis Henri” and help us to leave a legacy of hope and be a beacon of light for people with PWS. If we unite as a community everything will be possible to achieve. As parents we make the commitment when our children are born to be there for them no matter what it takes. The question however is who will look after our children if we are not there anymore? Not something we want to think about, but definitely a reality for all of us with children and even more so if we have children with special needs.
Every day is for sure a challenge with PWS, but together we can support each other, share the load and strengthen each other. To all the parents with PWS children stay brave, guard your sense of humour with your life and believe that there is hope and that all will work out well in the end.
Please visit our Facebook page and website for more information or contact Liezl on the number below or email
Liezl Warnich Vlok