Tuesday, May 30, 2017

Greetings from South Africa!

Goeie dag, my naam is Karin en ek woon in Kaapstad in Suid Afrika.

This means, good day my name is Karin and I live in Cape Town in South Africa in Afrikaans.  My home language is actually English and my Afrikaans is quite poor despite having an Afrikaans mother J  Afrikaans is one of the 11 official languages in South Africa.

My daughter, Bianca has PWS and she is 9 years old.  Her favourite things are Spiderman, lego, swimming and horse riding.  She is very patriotic and loves to dress up in our South African rugby colours  and wave our flag J  My friends describe her as a trooper as she is always so enthusiastic about life and cheers everyone on!  She struggles academically and physically but her enthusiasm has gone a long way to closing the gap on her peers.

One of the challenges of living in South Africa with PWS is that there is very little medical or therapeutic support for people with rare diseases or special needs.  Neither the State nor private medical aids will pay or contribute towards Growth Hormone Therapy.  Unfortunately this means that many people in SA cannot afford to use GHT.  Special needs schools are also limited and expensive.

I find it difficult to give advice as through communication with other parents it seems our kids are all so different.  However generally I find the “Power of NOW” helpful.  Do everything you can to help your child now for their future, but don’t stress too much about the future.  When Bianca was first diagnosed and we read up about PWS we thought.. phew! we are in the “honeymoon phase”.  Well almost 10 years on and we still feel that we are in the “honeymoon phase”.  As your child grows and new challenges arise, we as parents grow too and learn to adapt to these challenges.

Have a great PWS awareness month!

Totsiens (good bye)