He rolls to his children with cystic fibrosis. Emmanuel de Calan prepares for a journey of 1300 km by bike from Carry-le-Rouet up to Roscoff. On his way, he would stop in the medical centers specialized in this disease. And ask them three questions…
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This is a project that was at heart for a long time. Make a journey by bike, in the form of a sporting challenge.
To support two of his children, Samuel, nine years old, and Joachim, two years, with cystic fibrosis. But also all the patients with this disease.
A change in the professional life of this commercial director has left him a little time. Enough to embark on this sporting adventure.
“I’m the father of four children. Two patients with cystic fibrosis”says Emmanuel de Calan. “It’s been several years that I wanted to do a trek bike sports, for them, but I didn’t have the time.
And there I left my job in February and I starts another in September. It is an opportunity”.
And the challenge is, as Emmanuel, 38 years, is not a great athlete.
But it has a morale of steel, and will run from 18 June to the onslaught of 22 steps that separate it from the breton town of Roscoff. At each step, it will run between 60 and 75 km. An effort worthy of a good wheeler.
But the challenge is not that sporty. Emmanuel de Calan account stop in the resource Centres, and skills of cystic fibrosis (CRCM). And meet with the doctors, but also patients and their parents.
“In fact, I have three questions, which will be every time the same questions. What interests me are the different points of view from doctors, physios, parents, grand-parents.
In addition to the CRCM, I’ll be housed with people that I would like to ask the same questions. They are either sick, or parents or grandparents of patients, or researchers, in fact people that revolve around the disease.”
The father of the family has chosen three simple questions as “cystic fibrosis is a disease intrusive in the lives of everyone. People already receive me among them, so the goal is not to spend the evening to ask questions. But this is very short”.
How is it that you will explain the cf ?
“What is interesting is to have the point of view of a physician who is going to be very theoretical, and the point of view of a parent who would rather be in the organization. The sick children, for example, can tell what they can do or not compared to their buddies”says Emmanuel de Calan.
“Our son Samuel has had some difficult times at school last year. He had to take the medicine before the meal. And for administrative reasons, he was obliged to leave the course half an hour before, to eat all alone. He has suffered so much, and felt marginalised”.
How do you prepare your appointment at the CRCM ?
“There it is at the heart of the issue. One has an appointment every month in the CRCM. There are families who reported everything that happened at the house during the month that just happened. And others who have nothing prepared. Who have not noticed the temperature of their children, nor observed his stool, or his physical condition.
Of their sides, the doctors prepare for appointments with their teams of physios, dieticians, psych, nurses. The teams are multidisciplinary because cystic fibrosis affects many organs.
And what they expect from this appointment, it is a lot of parent involvement. Because they must know the lived in the house. For example, the sport is very important in this disease. If the child has stopped its sessions, they need to know in order to readjust the treatment.
The sport has a very important role in the cf to be able to cough up the sticky mucus. It is from there that comes the name of cystic fibrosis”.
The cycling challenge will travel 1300 km
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© Emmanuel de Calan
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What message would you have for a newcomer about your CRCM ?
“What is interesting is to obtain interesting points of views on the CRCM. Ideas could be repeated in other centres”according to Emmanuel de Calan.
“The CRCM, Marseille, which follows our two children is amazing. They are reassuring, we are left autonomous when it comes to changing the treatment. They leave the place to the family while having a great listening. I find that this is the way that it is necessary to treat this disease : as a team.
I decided to record all of the evidence, and I will do a report for the association “Defeat cystic fibrosis”.
“Carry Roscoff Fight Cf,” the adventure at the start of the June 18,
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© Emmanuel de Calan
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Emmanuel de Calan also organises a collection, went entirely to this association. The father of Samuel and Joachim hoped to get 10 euros per kilometre travelled. It is not yet a party, and the amount of its prize pool has already surpassed the double.
Emmanuel, his wife Sarah and their four children will be starting together on the 18th of June, Carry-le-Rouet.
After three weeks of adventure sports, rich dating, Emmanuel will succeed in Britain. On the 11th of July, of new Sarah, and their children will be there to accompany him in his last few kilometres, up to Morlaix-Roscoff where it is native.
This will be the last step of this journey to solidarity. But it may not be the last challenge of this loving father, who admits to “when we take care of others, one does good to oneself”.
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