Living with disease: Noa Lûu, 14 years old, and his mother testify

Noa Lûu is now 14 years old. She is a teenager with a zest for life who likes playing and singing. A few days after her birth in 2005, she was diagnosed with methylmalonic acidemia (MMA).

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This genetic disease is linked to an abnormality in the normal metabolism of amino acids. Due to a defective enzyme, Noa Lûu’s body cannot properly metabolize some amino acids in food. They accumulate in the form of harmful substances, particularly for her kidneys and her liver. Therefore, Noa Lûu cannot eat like all other teenagers her age: she is not allowed any high-protein foods, meat, fish, eggs, milk products, flour and all foods derived from them, bread, biscuits, cakes. She has to follow a drastic low-protein and high-calorie diet.

A life at the pace of the treatments and the disease

In everyday life, this means weighing every meal, medication and care, etc. However, for Noa Lûu, living with MMA is also about being fed by nasogastric tube: every evening, a bag has to be prepared, and again, products have to be weighed, some of which come from the pharmacy in Nanterre (Ed.: Noa Lûu and his family live near Le Havre). That means that the prescription has to be sent so that she is not short of products. Then, Noa Lûu puts a tube in her nose - herself?? - which will help her to eat properly all night with, in return, the constant noise of the pump.

Noa Lûu
Noa Lûu

In front of a bakery, with nice ‘galettes des rois’ presented, among other things, and with such a delicious smell of croissants, pains au chocolat, how can you not be sad about Noa Lûu’s reaction “hmmm, it smells so good mom, but I can’t...”

For Marylin, Noa Lûu’s mother, between supervised, controlled meals and treatments, there are also messages on the answering machine with notifications to attend Necker hospital. “For 14 years, it has always tied me down,” she explains.

For 2 years, Noa Lûu has continued her education at home. So when the pain comes back and the tiredness appears because she has to see the doctors again or even plan a hospitalization, Noa Lûu can at least ask “Mom, can we have a lesson please (French, math, etc.), it will pass, right?”. And Marylin continues: “There is the home school, sport and equally rewarding activities, which make her “go out”, and which do her good”. Because for the teenager who is full of dynamism, her sports, karate, gym, swimming, choir and pottery lessons are a breath of fresh air. Just like the weekends with her brother Axel, who is studying sport science: as soon as he gets home, he also teaches her things in the form of games. And we must not forget the vegetable soup that she can eat and that she loves to make with her father, her dogs, two wonderful mastiffs, and when she has a spare moment, she loves making bracelets with her older sister that she sells on in aid of MMA research. Noa Lûu is a ray of sunshine to those around her and never misses an opportunity to support all the other young patients.

Noa Lûu-famille
Noa Lûu et sa famille