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Marc, Age 36

Marc, Age 36

MMA, Cbl B, Non B12 Responsive

Hi, I’m Marc from Belgium, I have MMA Cbl B, non-vitamin B12 responsive. 

I’m 36 years old and for a person with my condition, I am in good shape. 

Five years ago, I already had the honor to write an article in the OAA Magazine. Now, I am proud to receive this honor again and tell you a little bit about my life and my family. 

The article from five years ago was about a big step in our lives. I had just married my wife, Annemieke, a type 1 diabetic. In the article, I told you about how difficult it was for a person with MMA and a person with type 1 Diabetes to commit to the lifelong commitment that is marriage. Two people with a disease who want to live a normal life, two people who took the risk and took this big step in a human’s life. We also announced another big step in our life, because we were pregnant with our first child. 

Now five years later, we have taken this giant step. On July 7th, 2016 we had a son, who we called Bengt. “Bengt” translated in Norwegian means “Brave as a bear”. It was a dream come true, this little perfect human being, who was completely healthy came out of 2 people with a disease.

It did was a very difficult birth, in which both mother and child had to fight for their lives. But in the end, Bengt honored his name and was brave as a bear and came out as a beautiful young boy. Annemieke also survived the life threatening experience. 
Now, we have a little miracle, a healthy and energetic son. Yes, it was a risk to have a child, not knowing what our own future will bring. How our disease will evolve, would we be able to take care of Bengt? Would we be able to give him a future? But we are so happy we took the risk! 

Bengt is an active, sweet, little boy who gives us more joy in life than we have ever had before. Although he can make us tired, even completely exhausted, his smile and enthusiasm also gives us more energy than any energy drink would ever give us. 
The combination family – work – health really became too much for me. I moved to working part-time. My kidneys became worse. With a lack of patients with MMA in Belgium, we went to the NIH in Bethesda to Dr. Manoli and Dr. Venditti, in 2019, to ask for their opinion. Finally the result came and my kidneys were effected, but I didn’t need transplant right now, but I will in the near future. My liver was ok. So, it would only be a kidney transplant and not a kidney-liver transplant. 

Because we like to travel, after our visit at the NIH we went travelling the USA for a few weeks and we visited family in the USA. After going through China this was the 2nd big trip for Bengt in his short life. 

The big question remains what the future will bring? Are we going to be able to give Bengt the future he deserves? Are we going to be there for him when he needs us? Aren’t we going to be too sick or too tired if he needs us, I don’t know? Maybe all parents ask themselves these questions, but we did think this over and we are sure we will do anything in our power to give Bengt anything he needs. And because we’ve been through so much in our lives, we realize even more than other people that it is the little things in life that matters the most and being near the people who love you is the most important. And that is the message in life we want to give Bengt. 

Our diseases could be an enrichment in his education, instead of an obstruction. We raise Bengt with the message to enjoy every day and savor the big moments in life, but also enjoy the many little moments of joy in his life. 

Don’t get us wrong, having a child while you both have a disease is a challenge. But with the support of family and friends it may work for us. Bengt has two parents who will do everything to make him happy, now and in the future. 

Maybe the message we want to give you is that sometimes it is worth taking a risk!


Read my previous update from the Spring 2016 Newsletter > 

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