Lifestory Michiel
By Godelieve and Wim , very proud parents.(Living in Belgium)
When Wim and I married, like everybody else, we wanted to build a home and have children. The time came to think about having a baby: First time expecting: yippee! However unfortunately, this went wrong. A few months later: yippee! Very glad because we were finally going to be parents. Again: had a miscarriage. Disappointment, sadness, a lot of tears. The third time was going to be the right time. Very careful. Had a great pregnancy. After a few months, the baby was still there. Everything went all right.
Michiel was born on June 13, 1998 in the hospital in Hasselt during the soccer match Belgium - Holland! Although the news about the soccer match was relayed to me during labor (I couldn't care less), the fact to finally be a mother soon was more exciting! I was in heaven when I had my son in my arms for the first time. I was on cloud nine! I could not be happier at that moment.
Wim had the same feelings: he wanted a son and if possible a soccer-player! We were “mammy“ and “daddy“: a child is the greatest gift one can receive in one's life. The only thing from both of us! Michiel had three patches on his face and a very dry skin on his belly, but as for the rest he was a normal baby. We were very happy indeed.
He did not eat very well and gained very little weight. At mealtime you wondered: “Is he going to eat or not?“. We had been told to rub the skin on his belly with ointment, because it was too dry.
We were not really concerned, until our doctor told us to see a specialist at the university hospital in Leuven, because she had never seen someone like Michiel, who was then six months old. So we also began to worry. The specialist in Leuven saw Michiel, spoke with a few other doctors and after a short period told us not to worry. Two to three times a year we went to the same doctor, who told us each time not to worry, while in the meantime he was doing genetic research on Michiel. We got no answers to our questions.
There comes a moment when your motherly intuition tells you that something is basically wrong with your child. This lasted for about two years. Whenever he was sick, he had to go to the hospital because his weight was too low. His weight and height were below normal. He was 4 years old ( 92cm and 9 kgr.) For three years these figures did not change. You can imagine what we tried.Everything to encourage him to eat: sweets and punishments did not help. His small face was remarkable with wide-open eyes. The hair on his head became thinner and started to fall out. Finally he became bald. At that age! Something was terribly wrong. The skin became very thin. You could see right through it. He had bags under his eyes. The skin was very delicate. Blue blood veins could be seen. Everybody on the street, in the stores, looks at it. You become very unhappy. The feeling is contradictory; on one hand, as a mother, you are very happy with your child, on the other hand you hate the look of the people regarding your child. So I let him wear headgear and I even went to a doctor who promised that he could have hair grow on his head. You do all you can to help your son. Thanks to the support of family, you get out of the depression again and again.
Some time later my pediatrician told me to look at a special program on TV that evening, about a girl Sabrina, who had an illness called “Progeria“, and she thought that Michiel had the same illness, because she had been studying this. I had never heard about this illness. I went home without much courage, informed my husband, my sister and a few friends to look at that program on TV. I cried and cried because there was a very great similarity between Sabrina and Michiel. We told each other: “This is what Michiel is afflicted with“. We went back to the doctor in Leuven and asked him about Progeria. Each time he told us not to worry and no it was not Progeria. He told us: “Do not research it on the Internet because your brain will get the wrong impression“.
But my motherly instinct was convinced. I did not want my son to have this illness of getting old prematurely. I went on the Internet and found the site of a boy called Ben, who, in the meantime has died, and there I got to know a lot about Progeria.
Literally Progeria means: “early aging“. It is also known as “Hutchinson-Gilford syndrome“.
Children with Progeria develop early symptoms of aging, what normally happens when you are growing old.Progeria is very rare, but appears over the whole world, no distinction as to gender, race or skin color. Worldwide, there are about 50 children suffering from this disease.Progeria is incurable. The children age in one calendar year about ten years biologically. Emotionally the children are absolutely normal, but weight and height remain low. They have a small face with big eyes. They lose their hair and become bald. The skin is very thin and translucid. The blood veins are easy to see. The skin is very weak. Only the brain is not affected: these children are very bright and intelligent. The condition makes it more tragic because they themselves feel their death coming.
They usually die before their thirteenth year, due to heart failure or artery-sclerosis. All of the symptoms of the disease described in the website fit the symptoms of Michiel. I was 90 % convinced that Michiel had Progeria. It was terrible. I cried and had a very deep depression. To know that he had this disease was difficult to accept, but knowing that he would die before his 13th year did me in. Knowing that you have to lose your child is inhumane. I wondered what God wanted with such an inhumane disease. I wrote an e-mail to the person mentioned on the website and told of my son Michiel and the similarity with Ben. I got an e-mail back that she was the mother of Ben, and she proposed to meet. I had many bad days following this e-mail. But we went to Holland to meet her.
You are in constant thought about this meeting and hope that it will turn out not to be Progeria, so that your son can live longer, a wish of every mother. After arrival, greetings. Marjet embraced me and looked at Michiel and she got tears in her eyes! Everything became very emotional. She confirmed that Michiel had Progeria. The similarity was too great. Of course, you get very depressed. You start crying and asking yourself why he has this disease. We all cried together, and I felt an emotional bond with Marjet. After many years, I finally found somebody who had experienced the same thing: the love for your child, the thought that your child will die soon. Now I could go to somebody with my questions, because in Belgium, I was totally alone. Michiel went walking with his godmother, so that Wim and I could talk freely with Marjet.
You get to see pictures of yearly reunions and you see in these photos other Progeria children, but you always see your own child through them. They all look the same. When Michiel came back, I showed him a picture and he told me “Mammy, with whom am I standing there in this picture, because I do not remember this occasion, and who is this woman in the picture next to me“? When a child of 4 years old can see the similarity, why can a doctor of the University in Leuven not see it?
Marjet has given me all the honest answers to my questions, how the illness will develop. And I appreciate that because now we are informed. When you go to the doctor now, you can inform him so that he knows what to prescribe. She also told us to get a second opinion. Back home, It was very difficult to get up in the morning, knowing that your son will die. A Very, very depressing time, to such extent that my husband told me to get over it for the sake off Michiel! He may not know what he has to expect, and we will give him the best time of his life. We discussed all this with family and finally I came to the conclusion to get on with life, which I did. Though I still have my good and bad days!
Since I had no confidence in the doctor from Leuven, we went to the hospital in Antwerp. The doctor was very compassionate, took the time to talk with Michiel and us. She diagnosed that it was Progeria. She started up a complete examination, and we had to wait. In the meantime we were in contact with two doctors in Germany, who are well known for their research on Progeria. We stayed there for four days. They told us: “your son suffers from Progeria!“ Two weeks later we got confirmation from a doctor in Amsterdam that in his opinion it was Progeria. The cooperation between the doctor in Antwerp and the German doctors was very good. The doctor in Antwerp said: “I can learn something from these German doctors“.
It was confirmed by so many doctors that you have to give up hope and agree with their opinion, as difficult as it may be. All this happened between September 2002 and April 2003. It was and still is a very difficult task to learn to handle this disease the proper way, the physical reactions of the body, and the negative reactions of the surrounding people. It is imperative that the child feels accepted, that it is loved. Unconditional love for these children is essential.
Since beginning a benefit by a member of the family and the publishing of an article in the local newspaper “Het Belang van Limburg“ a lot of positive things happened. People no longer look at Michiel as the boy from Mars, but now call him the boy from the newspaper article. They are not afraid anymore, and they do not show any more negative reactions. Now they call out to him, greet him, shake hands, they talk with me, encourage me, and show sympathy. We are fortified by these reactions and we are very grateful. We hope that Michiel can have a few more quality years.
Some more positive facts: Wesley Sonck, famous soccer player, spontaneously, on his own, came to visit us at home after he read in the papers that Michiel wanted to become a soccer player like Sonck. He went on the soccer field to play with him, took pictures with him etc. Michiel still talks about his best friend and about his playing. Michiel was allowed to give the starting shot for the last competition game of the season. Michiel was on the field together with his friend Wesley Sonck and received applause of 24,000 fans. I cried for the good emotions toward my son. That day, Wesley Sonck received the Golden Shoe of Soccer, but he made it a day for Michiel. He thanked the fans for the award, put it down, went to Michiel, took him by the hand, gave him a kiss and told him to kick the football. If you ever read this, Wesley, thank you so much for Michiel and for us. Accept a golden kiss from us all.
Then came a difficult moment in our lives: the first session in the television studio. For the first time I saw a boy of ten years old there, Nigel, who also was a Progeria child. He was sitting there almost lifeless; there are only 5 years between the two children but the difference is enormous. Michiel was still full of life. Everybody cried of course, but luckily Marjet was also present with her calmness and peaceful demeanor. The program has been seen on national TV and the reactions were very positive. Again it took me several days to get on with life. My husband told me: “You see that five years can make a great difference. Let us give Michiel all we can while he is still healthy“. And that we will do!
We went to Euro Disney in Paris (France): an incredible experience for Michiel. Michiel spoke to Mickey Mouse, Pluto, and everybody else from the Disney family. Michiel was thrilled. With open mouth he told me: “There is Snowwhite and the Dwarfs“. For him everything was magical. I am happy he enjoyed himself so much for two days.
On June 13, 2003, he turned five years old. Birthday cards from many friends, with nice messages and words. The whole family was present for the occasion. A party of swimming with all his cousins and nieces, water guns and the hearty smiles of all the children. Sitting on the lap of Auntie Netteke, his lovely and dearest godmother (Michiels second mother), blowing out the candles of his birthday cake. First, all of them singing together the birthday song. His face lit up. These are all very nice memories and I hope we can give him the same for a few more years before the difficult part will come. But we should not think about it now.
I want to conclude with a sentence for Michiel and Amber, when they are going to understand it all and they can read it. “Michiel and Amber, from the depth of our heart, we want you to know that we always will love you, forever and ever. We are very happy that you have selected us as your mammy and daddy. Michiel and Amber, we love you from here to heaven and back“.
Godelieve and Wim, your mummy and papa
P.S.: I have written those stories in the "I" form as their mother, but the whole text is related to the feelings of both of us, mother and father together.
UPDATE :
February 2009 :
Our Michiel is at this moment 10,5 years old. In June he becomes 11 years. A lot happened in 5,5 years. As you already know, Michiel became a big brother in 2006 of a little sweet girl, Amber. I walked on cloud nine during my pregnancy. The second best wonderful period of my life. Still I never imagined that it went wrong again. When Amber was 6 weeks old, she was diagnosed with the same disease as Michiel, namely Progeria. We went through a rough time but that is all in the past now. Finally you find a way to cope with the feelings. Ambers lifestory you can read on another page of the website.
It really is simple : we must look forward and this for our two children. A human being can be stronger than it thinks. Here I am going to update you about Michiel.
We have done some remarkable things : a voyage to Canada, visiting the real Santa Claus in Lapland, looking at a tennisgame of Justine Henin in which I received her racket, being present at some European and worldreunions of Progeriachildren, making a cruise with an tremendous ship, etc. Enjoying a lot of happy things. We have a lot of beautiful memories of it all.
Momentarily it just is a wonderful time. My children are my greatest happiness. I take them with me wherever I go, as much as I can. They love going away for the weekend or on a holiday. I can enjoy them so much. Michiel has helped me a lot with my grief over Amber. He has brighten me up thanks to his zest for life. He is a great kid and touches many hearts with his open and happy character.
With almost none expectation for the future, we're thrilled to announce that the Progeria clinical drug trial began on May 7th, 2007. Two children arrived in Boston, MA for their first of seven visits over a 2-year period, where they were given extensive tests and their first doses of the drug. An average of two families have been flying to Boston each week since then, and in October 2008, the trial became fully enrolled.
Twenty-eight (28) children from sixteen countries (Argentina, Belgium, Canada, Denmark, England, India, Israel, Italy, Japan, Mexico, Pakitan, Poland, Portugal, Romania, USA, Venezuela) are participating, ages 3 to 15 years. Children return to Children's Hospital Boston every four months, for testing and to receive new drug supply, and stay in Boston for 4-8 days each visit. While at home, their doctors keep a close watch over the children and submit monthly health reports to the Boston research team. For the duration of the trial, 1- 2 children per week will travel to Boston to participate
Our Michiel is one of them. The treatment serves to slow down the ageingprocess.
Unfortunetaly it is not that the progeriachildren can be cured.
Michiel must swallow two tablets daily with an intervening period of 12 hours (one in the morning and one in the evening).
5 years ago, Michiel was one of the youngest children with Progeria, now he ranks among the older children. How it can change. We are very proud of Michiel because he is always very brave with all the tests in the hospital. Since Michiel started with his treatment, he has grown 5 centimeters, he gets downy hair, his veins are thicker and his skin is more solid. He has no problems with side effects except diarrhoea.
As a mother these results give me a lot of hope, for him as well as for Amber and all the Progeriakids in the whole world.
5 years ago there was nothing against Progeria and yet we have a hopefull treatment.