Johan and Mariza van Deventer
Johan is a business man.
Mariza is a creative writer and owner of Legacy Centre – a tutoring centre for children with special needs. Mariza also registered the non-profit organisation BINAH which raises awareness for families with children with special need, and support the parents.
Age of parents:
Age: 10 years old.
Is this your only child?
We adopted Migael when he was 19 months old. We literally received an sms from a friend asking for a temporary home for this baby boy. We were the only people who responded of the hundreds of messages sent out by the ACVV. His biological mother asked us to adopt him during our second visit with the family.
Diagnosis of child:
We were aware that Migael had certain challenges, especially regarding delayed speech. We kept searching for answers and tried various interventions. Eventually we were referred to Dr Louise Lindenberg by Reach. Dr Lindenberg had tests done in France at Laboratoire de Biologie Medicale. From those results, and additional tests done at the North-West University, he was diagnosed with Phenylketonuria (PKU).
PKU is a rare inherited disorder that causes an amino acid called phenylalanine to build up in your body. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine. Without the enzyme necessary to process phenylalanine, a dangerous build-up can develop when a person with PKU eats foods that are high in protein. This can eventually lead to serious health problems.
For the rest of their lives, people with PKU — babies, children and adults — need to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein. Babies in the United States and many other countries are screened for PKU soon after birth. Recognising PKU right away can help prevent major health problems Babies in South Africa are not screened, which is so sad as it only takes a simple prick of the heel.
Migael’s diet is extremely limited due to the PKU. Katherine Megaw is a specialist dietician from Cape Town and she manages his diet. He must drink 210g XP Maxamaid (amino acids) every day. This is imported from Europe and costs ±R15 000pm. PKU is on the PMB list, so thankfully our medical aid pays for this. Unfortunately medical aid does not cover all the extra medication and supplements Migael has to take.
Due to the late diagnosis of the PKU, Migael also presents with symptoms of ASD and ADHD. He is non-verbal and has challenges socialising.
What are the biggest challenges facing your child on a daily basis?
The fact that he is non-verbal is a big frustration for him. He has a LOT to say and we are most often not quick enough to understand his sign language. Migael’s understanding of socialising is also a huge challenge. He loves being around people, going to the shops but the general public does not accept/understand people who are not neuro typical. That was the main reason why I registered the non-profit BINAH. People need to be educated and sensitised to be more tolerant of people with special needs. The general public also needs to realise that families of children with special needs, need their help.
What are the happiest moments you have with your child on a daily basis?
Migael LOVES spending time with his dad at the truck yard each weekend. Johan operates a truck wash where they wash the trucks of Grain Carriers and Unitrans. Migael has access to everything that is big and muddy and there are very little rules. I see Migael thrive at Legacy Centre and that makes me extremely happy. To see him playing with his friends is beautiful. He is an only child which makes time spent at the centre with his peers important. That confirms to me that opening the centre was the right thing to do.
Are you a single parent or married?
Married for 20 years.
Has your special needs child had an effect on your marriage?
Johan and I met while studying law. I always say that we never stopped laughing and I believe that’s crucial. Our faith and the fact that we both believe that Migael came into our lives for a reason, keep us going. That said, it still has been an extremely difficult road. Only within the last 3 years have we focussed on establishing a support system, people that know Migael and that can help us.
What has your child taught you about yourself, both positively and negatively?
It took a while for me to realise that I am stronger than I think. I also had to learn that I cannot do everything by myself and that I am allowed to ask for help. I have to focus on being patient. It is OK if my house looks like a plane crash, as long as I can step over it and the health inspector is not knocking on the door. Most importantly, take one day at a time…
Are your family and friends supportive?
We have no family that live close by. Emotionally they are supportive though. We have very few friends. I believe that happens when raising a child with challenges - You function within your own bubble…your ‘normal’. Since we opened the centre, we invite the parents every 2nd Sunday for a braai and that helps everyone to socialise and to relax
Do you take time out, if so what do you do to relax?
We realised that we have to make time for us, for our own and Migael’s sake. We try to go away for a weekend every 4 months or so. Migael loves staying at home with Natasha, his tutor. I believe he enjoys the break from us!
What has made the biggest difference to your child’s quality of life?
Definitely Natasha Ranna, his tutor. We met Natasha 6 years ago and she started tutoring Migael full time. She is one of those people who connects with children with special needs in a most extraordinary way. Natasha is family and we love her dearly. Migael’s Labrador Sam is also a BIG part of his life. They’ve been best friends for 7 years and Migael loves him to bits! Sam is so patient with Migael, their relationship is heart-warming to witness.
What is your dream for your child?
Our dream for Migael is that he will be self-sufficient and able to live a happy life one day. Our long term plan is to develop permanent lodging for young adults at the centre. Legacy Centre focus on teaching the kids life skills. We will be grateful if Migael and friends could live a happy life of meaning when we are no longer around.