Japie and Chrisna Leeuwner
Age of parents:
49 and 37
Mauritz, Japie and Verster
Age: 12 years, 3 years, and 18 months
Diagnosis of child:
Born with a bilateral cleft lip and palate (hard and soft).
Born with trisomy 21 (down syndrome)
Born with spina bifida. (lipomyelomeningocele-L5,S1,S2 and tethered cord) He had a lump as big as an egg on his lumbar region. That is the fat (lipo) that was attached to the spinal cord (myelo) and the membranes that surround the spinal cord (meningis) and the “cele” refers to the bulge. He had full thickness skin over the lesion. Verster had his “untethering” of his cord in August 2013. He started walking normally at 13 months.
What are the biggest challenges facing your child on a daily basis?
Speaks a bit nasally. The cleft in his palate on the left was so big that my little finger could fit in there at birth. Unfortunately, the larger the cleft in the palate, the shorter the soft palate is. Mauritz got his bone transplant for his cleft palate and a velopharyngeal flap operation for his soft palate on the 24 April 2014. Six months of intensive speech therapy will follow to insure the flap stays functional. This will be the 6th op for his cleft since birth. He also suffers from sinusitis.
Experiences a lot of frustration due to the fact that he can’t express himself. I’ve learned to be more patient with Japie. He walks, eats and plays at his own pace. He gets physio- and speech therapy weekly and that contributes a great deal to his development.
Bladder and bowel must be monitored. He must drink enough water everyday. We make regular trips to the urologist to check up on his bladder. Recurrent bladder infections and damage to the kidneys.
What are the happiest moments you have with your child on a daily basis?
In the morning when Japie and Verster wake up, they gave me their million dollar smile! Japie can give a mega-hug, which makes me feel like the best mom in the world. Mauritz is a chatter and loves to have long conversations.
Are you married?
Has your special needs child had an effect on your marriage?
Most Definitely. Special needs children’s requirements change, constantly. You don’t always deal with the same issues. When my children are sick or need to be hospitalised, it puts strain on the household. My husband works during the week, on a site 250km from home but luckily my parents are very involved and give me a helping hand whenever I need it.
Are your family and friends supportive?
Our family and friends are great. They love our children. My friends help me with Japie and Verster with school activities. I believe that my friends are handpicked for me! Without my support structure this would have been very difficult for me.
What has your child taught you about yourself, both positively and negatively?
Hardships build character. Our life on earth is temporary; we have so much to look forward to when we go to heaven. I believe in the after life. Keeping perspective on the challenges that face you.
We all face challenges while we are here on earth. It’s now and it‘s real. Every person in this world will experience some type of hardship during the course of his or her life.
Do you take time out, if so what do you do to relax?
I like to go the gym but unfortunately it doesn’t happen often enough.
What is your dream for your child?
All three of our children must reach their full potential, whatever their specific abilities may be. I want our children to be happy, to value the things that money can’t buy, to be comfortable with who they are and to know that disabilities are earthly-bound.