Mme Lordet on Noemie’s Hope Concert

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Mme Lordet on Noemie’s Hope Concert

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Why did you decide to start the annual Noemie’s Hope concert?  

17 years ago our daughter Noemie died when she was 7 and a half month old. She was affected by a severe form of leukodystrophy called Morbus Krabbe. Leukodystrophy is a complicated name which means that the brain and the nerves of the affected children do not develop properly and bit by bit they lose their ability to walk, to hear, to see, to eat and to breathe. As you may imagine that was a dramatic experience for our family. We had never heard of leukodystrophies before and we felt that we had to do something for all the children that were affected. This is when my sister Camille came up with the brilliant idea of organizing a concert as a fundraiser. She is a talented pianist who wanted like us to make a difference. I cannot thank her enough for her ongoing commitment and support.  This is how this incredible adventure started in June 2003. It was a small concert with only a couple of artists performing. What was supposed to be a one go happened years after years. This annual event has been very special to us but we feel that this is now the right time to let go like the balloons at the end of the concert.

 

What is one of your favourite memories of the concert in past years?

What has been incredible is that every concert has been quite special even though many artists came back every single year. My sister, Mrs Le Guen’s and Mr Smith’s choirs and Mr Wasner with the Jazz Band have been the core of the concert but the students performing or the songs are always different.. So it is kind of the same and different at the same time. I had a flamenco dancer and a Celtic group of dancers joining as well.

I am so grateful to all the artists.

I probably have one special memory per concert but I am going to give you 16  …but difficult to have just one favourite.

The first time Elodie performed on stage… She was 10 years old and it was for the 3rd edition. She just told me that she also wanted to do special for her sister and she never stopped since … She has a beautiful voice.

Simon Estes (an American opera singer) performed for us.. His daughters were in our school and the youngest asked her dad to perform. It was quite complicated because he was on tour a lot but we finally managed and it was an incredible moment…His voice was just so powerful…

In 2006 Louis was 4 weeks old the day of the concert and Elodie was carrying him on stage….Everyone in the audience thought that she was just carrying a baby doll ..So when I said that it was Louis first concert people realized that she was holding her baby brother, there was 10 second of stunned silence and then everyone started to applaud…

2010: My sister broke her right hand but wanted to perform no matter what. She played an incredible piece with only one hand and no one could tell that she was only playing with her left hand. An incredible performance.   

Three years ago Louis also wanted to perform as a pianist. He was quite nervous and he did very well. He had such a big smile on his face when he finished.

Two years ago it was my niece and she needed a special seat because she was too small… So cute.

This year for the last concert, Louis said that he wanted to accompany his sister and let her choose what she wanted to sing… He has been working so hard on a quite challenging piece…  

Mr. Wasner and his Jazz Band is always bringing some energy and fun in the concert. He always brings the best out of his students.

Mrs. Le Guen’s  choir has always performed for Noemie’s Hope. Every single year. For the last 9 years… A small choir with beautiful voices in it and sometimes teachers were on stage as well!

Every single year I cry when Mr. Smith’s Choir sings… It is a very special moment for me…  It is stunning. This year, Louis and I picked the three pieces that they will sing… So it will be even more emotional for me.

 

Can you tell me a bit about ELA?

The European Leukodystrophy association ELA helps the children affected by leukodystrophies and provides ongoing support to all families. They are always available for us. They provide financial help for treatments not covered by the insurance, they regularly inform the families with all the latest medical discoveries. They provide special equipment for the children, such as computer for visual impaired people, taking watches, special glasses, or tandem bikes. Every year they organize a special weekend for all the families during which relax and share our experiences. The famous French soccer player Zinedine Zidane and Swiss skier Denis Defalgo are two of the godfathers of this association. Ela has founded 497 research projects amounting to 42.6 million Euros.

 

What kind of performances have there been this year?

Probably 200 artists on stage:

Pianists, Singers, Chorists, Jazz Band,  Rock Band, Sinfonia, Flamenco Dancer..

 

How can we help raise awareness for this cause?

The best way is to talk about it…

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