Founding members of HWF
BOTHA WARNICH, HENRI WARNICH,
LIEZL WARNICH VLOK & HENNIE WARNICH
A FAMILY WITH A BIG DREAM
Our story is one of a family who refused to give up on a dream until it was realised. The Henri Warnich Foundation (HWF) was born out of both tragedy and love. Liezl Warnich Vlok is the mother of Ruan, who was born in 1996 with Prader-Willi Syndrome. Her brother, Hennie Warnich and his wife Yolanda, had a twin boy and girl in 2007, but due to complications their son Henri passed away. Liezl, Hennie and their younger brother Botha got together to start the Foundation in the name of their father, Henri Warnich and in remembrance of baby Henri.
The ultimate dream was to establish a home for adults living with Prader-Willi Syndrome.
What a journey it has been! After 7 years of endless planning, frustration, staying brave in the face of adversity, numerous fund-raising events and tremendous support from family, friends and strangers, the doors of Huis Henri were opened on 1 February 2019. We are situated in the heart of South Africa in a little Karoo town called Beaufort West. The HWF is extremely grateful for everyone who joined hands with us to realize this dream, this is not something that we could've achieved on our own. Nelson Mandela once said: “It only seems impossible until it is done”. We have learned this to be so true! Huis Henri is to date the first and only care facility in South Africa exclusively for adults living with PWS.
"Act as if what you do makes a difference. It does"
- William James
Prader-Willi syndrome is a genetic condition and the cause is quite complex. It occurs when there is lack of expression of one or more genes in a specific region on the chromosome 15 that was inherited from the father, the precise location of the abnormality being designated as 15(q11-q13).
To explain very briefly, some information or DNA is missing from the paternal chromosome 15. In 99% of cases it is not an inherited disorder and it seems to occur completely randomly.
Read more: https://www.ipwso.org/what-is-pws
Our vision for Huis Henri is to create a safe and supporting environment for our adult children to thrive in.. Our children knows 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 will give the residents an opportunity to become part of a circle of friends, to practice sports with their housemates and to make a contribution by creating work for them in a sheltered environment. Huis Henri are still in its infant shoes, but we are committed to support our adult children with PWS to be the best version of themselves.
We at Henri Warnich Foundation would like to invite everyone with a child, family member or friend who are born with PWS to get involved in the project of Huis Henri and help us to leave a legacy of hope and be a beacon of light for people living with PWS.
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 and believe with us that there is hope and that all will work out well in the end.
The long-term challenges for families with PWS members include the future care for these individuals. Most attempts to accommodate and integrate them in generic homes for disabled people have failed, because they require very specific management of their diets and access to food. Therefore it was decided that a home needed to be established that is specifically equipped for them and has trained staff that understands the syndrome and knows how to manage these individuals.
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 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 very 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.
It is an ongoing challenge to raise enough funds to keep our doors open. As a registered Non Profit Organisation (NPO), we are completely reliant on public funding and donations. We are forever grateful for every friend and stranger who bought into our dream and by doing so are helping us to keep the dream alive. An Article 18A Tax Certificate can be issued to anyone donating towards the Henri Warnich Foundation.
BOTHA & CELESTE WARNICH
YOLANDA & HENNIE WARNICH
LIEZL & DOUWE VLOK