Our Lola is a 6-year-old girl born in May 2016.
She is smiling, curious, teasing and very sensitive like most little girls her age.
Unfortunately, we realized very quickly that she was not like all the other little girls...
From the moment she was born Lola's life was complicated, she cried almost non-stop until she was three months old!
We thought about gastric reflux, which she did have. We were then told that she was intolerant to cow's milk...
In addition to her gastric problems, Lola was a little girl who slept very little... not easy as young parents.
We were told that we had to be patient and that everything would be fine.
Until she was one year old, Lola kept getting sick and showing great signs of fatigue and weakness, we kept being told that it was all related to her many infections.
She didn't develop like other children of her age, she couldn't sit properly, couldn't stand up, choked as soon as she had a piece of food in her mouth, hardly said a word...
Her father and I were worried, but we were told not to "each child evolve at his own pace".
And yet, from the beginning we knew that something was wrong.
Our daughter was hospitalized the first time but without any alarm from the doctors, then we went back and forth to the emergency room many times only to be told that we were worried about nothing... until the evening of December 24, 2017.
Lola had a string of viruses including gastroenteritis, and despite treatments, after a few days we found our daughter in a more than worrisome state.
Once we arrived at the emergency room, a doctor finally took us seriously and noticed that there was a problem.
After a month of hospitalization and a first controlled rhabdomyolysis, they started to talk to us about genetic disease, motor disorders and global delay of development...
And this is when world collapsed.
It took a lot of tests, medical appointments, and patience before we knew.
Surrounded by our family and friends we decided to create the association Des Ailes pour L to try to make things move forward and especially not to remain inactive in front of our sadness.
During the month of October 2019, we learned with certainty that Lola had a genetic mutation in the Tango2 gene.
At the same time, she was living her most severe rhabdomyolysis that almost took her away from us...
I think it was during this period that we really became aware of the seriousness of this disease!
But once again, Lola was stronger and recovered from this terrible moment of suffering.
We then connected with the other TANGO2 parents in France, which gave us the feeling of not being alone and of being stronger.
We learn every day from this disease.
We must fight to try to improve the life of our children who fight every day with against this disease.