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Williams Syndrome Association of SA
PO Box 19113
Tecoma, 5214
East London, South Africa
 
  
 
 
 
 

 
 

Elaine Adendorff

Elaine was born on 10 October 1999. We live in Phalaborwa, which is a town in Limpopo very close to the National Kruger Park.

From the very first day, Elaine was not doing well. She could not feed, and was crying all the time. 

When she was four weeks old, we decided to go to Pretoria to see a pediatrician. We badly wanted to know what was wrong with our baby, although our GP told us that some babies are just more difficult! Mother instinct told me there was something else!

The pediatrician immediately referred us to a cardiologist after hearing a hart murmur. We went to Morning Side Medi-clinic, where Prof. Levin told us the bad news.

Elaine had severe SVAS (supra valve aorta stenosis). Her heart was already enlarged, and the condition was serious.  Because she was so small, the doctors wanted her to pick up a little bit of weight before surgery.

On 10 December 1999, I gave my baby to a theatre sister in hospital, not knowing if we will see her alive again.  Prof. Kinsley was the surgeon. After hours in theatre, the news came, the surgery was a huge success and Elaine is doing well!  At that stage, Elaine was the youngest baby in the world to have this surgery and survive!

She did so well, she was discharged from hospital in only two weeks. We had our first Christmas at home with her.

At that stage, we did not know she had a syndrome.  Only when we went back for checkup the Doctors told us there was a possibility she has Williams Syndrome.  The FISH test was positive, and we were devastated.  I did not know how we were going to raise this child!  She was still not sleeping and crying all the time. 

Elaine started to walk only when she was 18 months old. She then started occupational therapy.  She started speech therapy when se was 5, and continued both therapies once a week, until she was 8.

Elaine is attending a private school in Phalaborwa, by the name of Frangipani.  The school was founded by parents in 1992 for disabled children.  She enjoys her school and friends very much. Most people in town know her! Always greeting everyone with her friendly smile.

Elaine loves music and dancing.  She enjoys life to the full!

She has a little sister, six years younger. Although they fight like normal kids do, she is very protective over her little sister!

Although raising a child with a disability is difficult, she is definitely a blessing in our lives.  She taught us to appreciate life so much more. 

We learned that God will not give you a special child, without giving you the strength that you need everyday.

We were specially chosen to be her parents
 

 

Elaine Adendorff