the essential
Based in Gréalou near Figeac, the Tabel family has been fighting against illness for six years. Two of the three children, Jean and Luc, suffer from Duchenne muscular dystrophy, a genetic disease causing progressive muscle degeneration. Since the announcement of the diagnosis, the whole family has come together every year for the Telethon. The father, Pierre Tabel, invested in the board of directors of the AFM (French Association against Myopathy) and the scientific council of administrators, confides his hope of soon seeing a treatment developed. Encounter.
What state of mind are you in on the eve of this new edition of the Telethon?
It's a somewhat special Telethon for us because we will be on set on Friday evening in Paris, to meet little Sacha's family. He is one of the ambassadors this year and also suffers from Duchenne muscular dystrophy. Sacha was able to benefit from treatment, from a gene therapy trial and it’s…. impressive ! I will intervene with Jean, our eldest. It's full of mixed feelings, of hope that we are getting to the end of Duchenne muscular dystrophy. When we see results in a scientific publication, on a paper, it's not the same thing as when we see a kid go up the stairs, get up and run… Today, he has a lot of emotion and thoughts for all the families who fought. We feel a form of sadness for all those who died on the field of honor and a great joy to know that a treatment will see the light of day.
Also read:
Lot: from Gréalou to Paris, the Tabel family testifies for the Telethon
How soon could this treatment be developed?
For the moment, we have no perspective. We have hindsight on dogs treated for almost ten years with this product and who will die of old age. But clinical development is very, very, very long. The time for research is not the time for the sick. For Sacha, the results were visible after a few weeks with an improvement in his muscular capacities. What bothers him today is that he is not as strong as his friends in his class in sports. For us, we're not there yet. We would already be very happy if the boys' condition stabilizes and they recover. We don't even want to dream that they will run one day… But this gene therapy trial is a huge hope.
How are Jean and Luc who are teenagers today?
Jean and Luc are very impressed by these results. Morally they are doing very well. Physically it’s very complicated, especially for Luc. Apart from the cardiac and respiratory level, everything else is complicated. Meals are long because he has difficulty swallowing. But he has the desire. Jean is not as damaged as his brother. But the disease does its undermining work. Little Sacha was diagnosed at the age of two when he had no symptoms. They did a test and found Duchenne muscular dystrophy. It is very, very early screening which occurs on average rather at 4 years old and for us even later at 7 and 9 years old. Sacha's mother had watched the Telethon and listened to one of the families testifying. It was our first year six years ago. She contacted me and I took the time to respond. So there is a small connection that continues today.
DDM – JCB archives
You are involved in the AFM. What does the Telethon represent for families like you who testify and mobilize?
Before the health authorities issue an authorization, this research must be able to be completed. And there are tens and tens of millions of euros that we need. It's a big deal for an association that relies on the generosity of donors, but we have to get to the end and as quickly as possible. Our goal is to have an authorized, effective product at a price accessible to everyone. The Telethon is always a very special atmosphere, people coming together and having a common fight. It’s always full of emotion and full of hope. A moment that should not be missed.
And locally, how do you follow the mobilization?
We will not be present, especially in Cardaillac where we are the sponsors of the events this Saturday. We've been running a fundraising page for several years, we have a lot of support with between 80 and 100 donors. It warms the heart to see in Figeac that there are people around us, to read comforting words, that we are not alone. It remains a long-term struggle: the AFM is still followed and people continue to mobilize. The Duchenne muscular dystrophy gene was discovered 35 years ago, it is an extremely complicated disease. Here we arrive at the end with this little Sacha treated 18 months ago. With this test, we are moving towards a normal, peaceful life. It's a small miracle.
Also read:
Telethon: the vibrant appeal of the Tabel family
Related News :