Parents
Dewald and Amanda Beukes

Profession:
Sales Manager
Secretary to members of parliament

Age of parents:
51 and 41

Child’s name:
Olivia

Age: 7 years

Is this your only child?
Yes.

Diagnosis of child:
Proximal femoral focal deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD), is a rare, non-hereditary birth defect that affects the pelvis, particularly the hip bone, and the proximal femur. The disorder may affect one side or both, with the hip being deformed and the leg shortened. In Olivia’s case it affected her hip, knee and right leg.

 At the age of 2 Olivia had a hip replacement as well as knee replacement. At 5 she had her first leg lengthening with an additional 3 surgeries due to complications. On the 5th October she will have her second leg lengthening surgery

What are the biggest challenges facing your child on a daily basis?
As my daughters’ disability is of a physical nature it is easy for others to bully her. Olivia wears a built up shoe and others notice it quickly. She has often asked why she is different from her friends and why God gave her “such a leg” but I try and comfort her by pointing her strengths out to her instead of harping on the children or people that try and make her feel different or less “normal” than other children. To me she is so normal - I see her for who she is as a person and not her disability.

What are the happiest moments you have with your child on a daily basis?
When we laugh together and forget all about the doctors, surgeries, hospital and all things medically related. When we just spend time together and appreciate the moment we are in.

Are you married?
Married

Has your special needs child had an effect on your marriage?
I can’t think that any marriage would remain unaffected by a special needs child. Our marriage like many other takes hard work as most of our efforts and time is spent in trying to give our child the very best medical care we can. In the process we forget that we are married and we often need to find our way back to being husband and wife, instead of mommy and daddy mode.

Are your family and friends supportive?
My mother and niece are incredibly supportive and a handful of friends, I don’t think many people comprehend the life of a special needs parent. We are often alone and left stranded by friends at the time we need them most. I have learnt not to take things personally anymore as I know that they can’t begin to understand the levels of stress we endure on a daily basis.

What has your child taught you about yourself, both positively and negatively?
I can honestly say that my child has only enriched my life in a positive way. Nothing negative has come from having a special needs child. I made a comment not too long ago to someone and said that I only realised why I was put on this earth when my daughter was diagnosed with special needs. I believe my purpose is to be my daughters advocate in all she does. It is a demanding role and very challenging at the best of times but I wouldn’t change it for the world.

Do you take time out, if so what do you do to relax?
I very seldom take time out for myself. My annual leave usually consists of spending time next to hospital beds or at doctors’ appointments. Spending time away from my daughter is something I don’t often do. I catch up on reading and watching a few movies when Olivia is in hospital.

What has made the biggest difference to your child’s quality of life?
I think the fact that my daughter has a mother who does more research than an FBI agent probably plays in her favour. As a parent I try and stay well informed and up to date with new information with regards to my daughters condition and treatment plan.

What is your dream for your child?
My dream for my child is to follow the course of this journey she is currently on and to come out on the other side as an adult who inspires others. I do not want her disability to define her. I would like her to be happy with the way God created her and the journey He chose for her.