Lenick

Age: 8 years old today!! Happy Birthday Lenick!

Duplication: 4p(12-15)

Lives in: Cape Town, South Africa

Meet Lenick Swart (Nicky):  What an absolute honour to be raising our “Engelkind” (Afrikaans for angel child). She is a happy, free spirit  - and reminds me every day of the simple things in life. I have learned SO much from this little girl and she truly touches everyone’s hearts she comes in contact with.  Herewith a little bit of our journey.....  

She was born in Cape Town South Africa on the 22^nd of March 2007 and we still currently live here.  She was born through caesarean on 38 weeks and we had NO idea of what was coming.  She was immediately transferred to neo natal ICU at a different hospital because she didn’t breathe.  We got to take her home 14 days later – being told that a valve in her lungs didn’t close.  I knew something wasn’t right – but it took a whole year for doctors to listen to us – they did EEG and she was diagnosed with Mioclonic Epilepsy.  It was only a year and a half later that she was diagnosed with chromosome 4p(12-15) duplication.  At this stage everybody advised us that we shouldn’t have any more children – at the visit to the gynaecologist to discuss birth control options – she told us that I was already pregnant.  7 month later we were blessed with a perfectly healthy baby boy- Corne.

Nicky’s main symptoms are the HUGE developmental delay and epilepsy and seizures.  She bum shuffled instead of crawling, and started walking at age 4 and a half (with A LOT of physio and a brilliant plan by my mom in law – please see video clip on how we got her to walk in swimming pool) She is still not talking – although very verbal – at the age of 2 she said sentences like “one, two, three – go”, but this regressed as she developed a new type of seizure.  She used to sign along when we sang songs and said a couple of words, she also had very good interaction and eye contact.  This all regressed and we thought it might be autism, but doctors confirmed very light general seizures.  We tried quite a bit of medication – not one of the combinations fully controlling her seizures, leaving her development far behind and causing behaviour changes every time we change something. 

  
She eats a toddler diet –mashed vegetables etc and still drinks from a bottle although from a spout. 

I am not sure how much she understands (although I think she might be playing me most of the times) – as she hardly does anything on demand, but certainly has the ability to do most of the stuff.  I always say that if you can bribe her like I do with her brother (e.g. eat your food or no TV) it would be SO much easier. And with instances would do something so in place with what we asked / that we are talking about – but if you try it again she won’t do it.  

She goes to school (Hands of Hope) and LOVES her friends.  She loves interacting with other kids although they tend to be scared of her as she makes funny noises and always has something in her mouth and drools a lot.  She shows a lot of autistic behaviours:  absolutely LOVES watching wheels turns (she will follow someone on a bike to the ends of the earth), she loves windmills and jumping on the trampoline and swinging.  Because she is non verbal, she has the tendency to smack you to get your attention – and she smacks quite hard – so this makes it very difficult for us to take her to public places as she sometimes hurts the other kids.  She does not seem to experience pain – so smacking her back does not have an effect.  So if we do go somewhere either me or Nico (my husband) follows behind her at all times. I always explain to the other kids on the playground that she is like a big baby (as she is more or less developed on a 1 year old level), although she can reach everywhere and open all the doors!  Needless to say all my top shelves in the house are filled to capacity – LOL! 

She still wears a nappy, although we have started with toilet training.  She started taking me to the bathroom for number 2 but during the holidays broke her foot that put us back quite a bit. 

We recently got involved with SixtyOneThree.com – they are training a Golden retriever for us as an autism assistant and seizure control dog – her name is Fixie – you are more than welcome to follow this story on:  www.facebook.com/Findingfixie

 It is certainly not always easy, and definitely not how we ever thought our lives would be – but this has been the most amazing 8 years of my life - Filled with ups and downs, laughter and tears with a LOT more to come. 

Through Facebook I connected with other families – coping everyday with the same or even more than what we do – and this means so much to me.  For when I am down there is actually someone that understands that encourages and listens without judging.  Thank you so much for this group and for everyone’s involvement raising awareness for our kiddos.