Name: Liesbeth Parlevliet

Birthday: September 3rd, 1963

Location: Voorhout, Netherlands, Europe

Family members with EB: Dennis, 7 years old, RDEB-HS

Biography... in her own words:

Hello, I am Liesbeth Parlevliet. I was born on September 3rd, 1963. I was the third child in a row and there were two more to follow. So we had a busy household, with plenty of friends to play with and loving and caring parents.
During my puberty, I turned out to be rather rebellious. I turned against lots of values my parents had thought me. I dyed my hair black (!) when I was 17 and adored heavy metal music. At 21, I got my motorcycle drivers’ license. Children of my own? Never! Looking back now, I think I must have been hit on the head by something, but back then that was life for me.
Johan and I met back in 1987. I had my own motorcycle, maybe this inspired him, I don’t know. Anyway, we started dating, fell in love and I moved in with him after a year and a half. We lived together for three and a half years and talked about life, future plans, children.
At a certain point we decided to get married. We got married in 1992. A few months later I was pregnant. Me, who always told everyone that I was never ever going to have children! This must have been a shock for lots of our friends, let alone myself and my parents.
Dennis was born at home on June 11th, 1993. It was a natural birth, and took place in our own home. I had planned to deliver in the hospital, but it wasn’t possible to get there in time because it all went very fast.
The doctor that had delivered him wanted him to be seen by a pediatrician, because his legs were absent of skin, and so we went to the hospital. Later that day a pediatrician came into my room and told me that they were not sure what was wrong with him, but that everything pointed to Epidermolysis Bullosa. They advised us not to send out the birth announcement cards, if he had a severe form he might die in the first few weeks.
We were in shock at first, but after a good night talk we decided to send them out anyway. Even if he might die, he would still have been born as our child. But he didn’t die. He lived. It turned out to be that he had a severe form of EB (he has the recessive dystrophic Hallopeau-Siemens type), but he decided he wanted to live. He is a real fighter and we are fighting with him and for him.
Liesbeth with hubby and son Dennis, RDEB and daughter Suzanne, EB free.I was asked to join the board of DEBRA Netherlands when Dennis was about 18 months old. I accepted, because I wanted to try to make a difference for these children. I got to know a lot of people that were involved with EB, I learned a lot, and after a while I was able pass on my knowledge to others. This made me feel good – I was glad that I was able to help parents with caring tips and support, two things that we never had when Dennis was born.
In the mean time, lots of things happened with Dennis. Taking care of his needs came first. This has a huge impact on our private lives. It sometimes feels like he is the only thing that matters in our lives. Everything we do or think about includes him and EB. After almost 3 years I got pregnant for the second time. We had done genetic counseling, because we wanted to make sure that no other child would have to suffer the way that Dennis has to. If there was a way to prevent it, we would. This sounds simple, but it sure wasn’t. Termination was what we talked about a LOT. Of course, the chance was "only" 25%, but it happened the first time, so why not this time? It was a heavy load mentally. The test could be done in the 11th week. I had a hard time not getting attached to the unborn baby, I was trying to "forget" about it the whole time. I tried to shut myself down for all emotions concerning the pregnancy. And boy, was I tired. You could tell just by looking at me that something was going on with me. And we told no one about it except our family members… After the test we had to wait another two whole weeks for the results to come back. Those were the 2 longest weeks in our life…On a Saturday morning the phone rang. It was very early and I thought who could that be? It was the geneticist. He told me to sit down. He told us that he had good news, that the baby was EB-free and that the baby was a SHE. Knowing whether it’s a boy or a girl usually is a big surprise for the parents. Ultrasounds are only done when they are medically necessary. It was weird to know that we were expecting a baby girl.
On September 15th Suzanne decided to come into our world. She had all this gorgeous baby skin and I just kept staring at her for at least an hour. Dennis was excited about it, he finally got his baby sister!
Taking care of Dennis’ needs still comes first. But now we have learned to enjoy life too, aside of all the worries. Suzanne brings balance into our lives. We have learned to enjoy and really appreciate the little things she is capable of – things that many other parents with healthy children take for granted. It keeps me going. I am worrying a lot about Dennis’ health and future. Sometimes I can hardly handle it and it is still difficult to share. Johan thinks differently about certain things, and that doesn’t make things easier. Being able to just simply enjoy the little things of life, makes it easier getting up in the morning and face another day. I realize that we were very lucky. We are blessed with two beautiful children, one with and one without EB. But oh boy, life turned out to be very different from what I ever could imagine…

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