I’m very happy and privileged to have Maryze Schoneveld van der Linde as the first Fighter to be featured here. Although Maryze and I have never met in person I consider her as one of my close and dear friends. There’s a kinship that is born when two people go through a similar experience. A bond that is forged between them.
Maryze is one of the greatest Pompe patients and person for that matter that I’ve met. Her contributions to both the Pompe community, her family and her work are priceless. I can attest that the Pompe community is much much better because of her.
*Juan:* Hi Maryze, could you please tell us a little bit of something about yourself. Brief background on who are.
_Maryze:_ I was diagnosed with Pompe at the age of 8 years, in 1979. My brother, who was then 4 years old, immediately was checked as well and luckily we found out he was not a Pompe patient. Several years before the diagnosis I already had problems like falling down frequently, being sick often, always an elevated body temperature etc. Just after my diagnosis my parents had a wish to have a 3rd child. To be able to do a prenatal diagnosis my parents and I had to undergo another muscle biopsy. With the results of these biopsies the clinical geneticist in Rotterdam was able to perform a prenatal diagnosis. In March 1980, my sister was born, a healthy baby.
I went to high school and after I graduated I went to the University of Leiden to study Cultural Anthropology. One year after I moved to Leiden (about 175 km from where my parents lived) I started to need ventilation.
I met Anton (my partner) in 1987 and one year later we became a couple. From that time on I had my parents, partner and other family supporting me fully. My best friend Carina, who I met in Leiden and who also studied Cultural Anthropology supported me as much as she could. Later my brother started to study Molecular Biology in Leiden and from that time on he cooked once a week for me, so I was able to eat some fresh prepared meals.
I spent about 3 days a week in Leiden and then went back home again because being responsible for household activities was quite a heavy job. Luckily Cultural anthropology is a study that is pretty autonomous. It’s not like Medicine where you have lectures every day of the week.
I was lucky to have friends, family and a partner who took care of me very well.
*Juan:* How has Pompe affected your life?
_Maryze:_ It did affect my life of course. When I was diagnosed I remember that my parents were very sad and upset. They never really showed it to me, but somehow I knew it. I didn’t understand why they were upset, while according to my perception there was nothing wrong with me. I was still the Maryze I always had been and at that time I thought that one was only sick when one had a high fever. However since the diagnosis was known some things did change. I didn’t need to participate in gym class or other physical activities at school anymore. When we went biking together, my father always pushed me by putting his hand on my shoulder. But for the rest I was treated normally, like they always had done. Like my brother I too had to do the dishes after dinner or had to tidy up my room when it was a mess.
I managed to get my swimming certificate (a very important thing in the Netherlands) by doing only the half of the assignments. My swimming teacher agreed to support me to pass this exam. In a country like the Netherlands with a lot of water it is very important to be able to swim. Everyone expects a child to be able to swim.
My friends knew that I had Pompe disease. Sometimes when we had to run, my friend would take me by my hand and drag me with her. That is how I was able to run even when it was only for a short while. After that I was exhausted, but for me it was very important that I had been able to run.
At the age of 12 I realized that I would end up in a wheelchair and I cried one whole night. Then I thought by myself, oh well I can feel worried about my future now, but people in wheelchairs also do have a life. So I decided not to worry about it anymore and try to do what I was able to do. No one told my parents and me that I would get breathing problems, because it simply was not really known at that time.
In 1986 at the age of 16 years my mother and I participated at a conference about ventilation in neuromuscular disorders. When I heard about ventilation I thought that it was a good solution for people with breathing problems, but I never imagined that I would belong to that group too. 4 yrs later at the age of 20 years I also got a ventilator. I was happy with it because thanks to the ventilator I could study again, concentrate again, I didn’t have headaches anymore, no more anxiety, no more nightmares etc. etc.
When I received my ventilation I had to stay 5 days at the ICU. I returned home on a Friday, just before the weekend. The next Monday I was traveling to Leiden again with my ventilator to continue with my study. That week I passed the 3 exams I had learned at the ICU.
*Juan:* How has Pompe changed the way you view life?
_Maryze:_ I always felt that I had to do now what I was able to do. I knew I couldn’t postpone the things I liked to do in my life. I had to do everything at a young age and enjoy it at that moment, because I knew that I would deteriorate further. That is why I traveled a lot early in my life. When I was a child with my parents and with Anton from the age of 18. The nice thing is that, inspite of my ‘disability’ I still travel a lot. I like to experience other cultures and to see other cultures – afterall I am a Cultural Anthropologist. Traveling with ventilators and a wheelchair requires a lot of organization, but it’s absolutely possible. I can’t travel alone of course, but up till now Anton, my parents, brother and sister always supported me.
Pompe also taught me that life is important and wonderful. In spite of all the problems, it taught me what was really important in life; Love, joy and happiness.
*Juan:* Do you ever have moments of regret that you have Pompe?
_Maryze:_ No, not really a regret, somehow it belonged to me. I always knew that I wouldn’t become old, but I decided that if I would die early I wanted to die with a feeling of satisfaction…that I fully lived my life. It took a lot, but it also gave a lot. Sure I did cry. At certain moments in my life I cried often. Especially when I lost another body function. I also learned that it’s important to take time for the mourning processes I went through. When the time passed I also was able to find my own new way to deal with it.
I am also happy that my parents always were very open and honest to me about it. We did talk about Pompe and everything that was affected by it. They took me to patient meetings of the VSN where I saw children of my own age in wheel chairs and I saw they did have fun as well. These experiences also were important to widen my horizon on life.
So I learned that happiness has nothing to do with how good one is able to walk.
When I met Anton I talked to him about my disease. When we met I was still able to bike, walk and I was without a ventilator. He too saw me slowly deteriorate and at the same time we both were able to solve the problems that came with it.
When I wasn’t able to walk anymore we took my wheelchair so we were able to go out anyway. When I wasn’t able to shower myself he showered me. At the time I needed a G-tube to increase my weight, he fully supported me with this. His attitude and support with all the normal daily tasks made it possible for us to be together.
*Juan:* Speaking of Anton, how has he adjusted with your situation?
_Maryze:_ It was difficult for him too, but he just accepted it. He knew he had to do that. He knew what was going on. The deterioration process I was going through, was a slow but steady process. A process that gave us the time to ‘accept’ it.
Somehow we are a team in our fight with Pompe and we were always able to find a new way. We know that together we are a strong couple and I think it’s also because of Pompe. Afterall we managed the many deep problems that were caused by the disease.
*Juan:* Now with Myozyme how are you looking towards the future? Has your outlook changed?
_Maryze:_ Sure it has. I know now that I do have a future…before Myozyme I knew that I wouldn’t become old. Now however I have to take care of my financial situation to be able to take care of myself at an old age. I also know that a good physical condition is very important because it’s in all our benefit. Just the important fact that I regained my energy back we got more freedom. It’s not a problem anymore when I am home alone. Only during the night I think it’s wise to have back up. I am not looking ahead too far in the future, because some things will be taken care of automatically.
*Juan:* What do you mean when you say that?
_Maryze:_ Like questions where do I need to live? I now live at my parents house and Anton’s house. I do have two houses, but they are not my own. Somehow I am convinced it will be taken care of. It will come with the flow of life. It doesn’t make sense to worry about things you can’t take care of at the moment.
My brother and sister too are very aware of Pompe. With a sister who has Pompe disease, they were affected by it too. A couple of years ago my sister wanted to know if she was a carrier or not. I asked Rotterdam to determine my DNA mutations. By knowing the DNA mutations that caused me to have Pompe, it was very easy to examine if my brother and sister were carriers or not. They both were. My brothers wife then also checked if she had a mutation that can cause Pompe disease.
*Juan:* Do they both have children of their own?
_Maryze:_ My brother does have a son. Luckily my nephew is unaffected. My sister doesn’t have children yet, but when she wants them she knows that it’s wise to test her partner. In my family Pompe was never a taboo. We all knew the impact of Pompe disease too well.
*Juan:* What would you like to tell Pompe patients and their families?
_Maryze:_ I would like to tell them that Pompe disease is not nice to have, but that it’s not the end of life. Life itself contains so many positive things. We only need to open ourselves up to it. I know it’s possible to be happy and lead a wonderful life when one is in a wheelchair and on a ventilator. Sure it’s not the easiest life to live, but it is maybe because of these challenges that teaches us how special life is. I do know ‘healthy’ people who are not leading a very happy life.
Everyone must try to make the very best out of life in spite of all the problems we meet. With Myozyme we, Pompe patients must realize how lucky we are. So many people with other diseases still don’t have a therapy or drugs.
*Juan:* Thank you for taking the time to share your story with us.