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by Margaux Lannuzel
[FR]
Colette est née sur un air de Césaria Evora, en une fin d'après-midi de novembre, à la maternité de l'hôpital de Lorient. Sa petite moue et ses premiers pleurs ont fait chavirer nos cœurs. La suite de son histoire n'a certes pas été celle que nous avions imaginée pour elle, mais elle a été riche en moments de joie.
Les premiers ont eu lieu à l'hôpital, où sa force et sa résilience ont impressionné tous les médecins. Colette a ouvert ses grands yeux noirs, a pris goût aux câlins et a dégusté ses premiers biberons en établissant chaque jour de nouveaux records de millilitres. Au bout de deux mois, elle s'était mis tout le personnel dans la poche, en plus de faire de nous des parents gagas.
Son retour à la maison a été comme une deuxième naissance. Colette a fait ses premiers sourires dans notre salon. Elle a découvert les quais Lorientais, La Base et les Halles de Merville depuis son landau, parfois poussée par ses grands-parents, ses oncles et tantes ou nos amis venus lui rendre visite. Nous avons même fait ensemble un grand voyage jusqu'à la pointe du Finistère, où Colette a passé un week-end en famille et rencontré l'une de ses arrière-grands-mères.
Le retour des séjours à l'hôpital n'a pas entamé sa bonne humeur. Fascinée par les écrans d'échographie cardiaque, Colette s'est mise à rire entre deux auscultations. Elle n'a pas vraiment admiré la vue sur le golfe du Morbihan lors de ses voyages en hélicoptères, profitant plutôt du bercement des vibrations pour faire de longues siestes. Un bébé "cool", ou "sympa" selon les médecins, qui ont même fini par croire qu'elle déjouerait les pronostics de sa maladie.
Il n'y a finalement pas eu de miracle et Colette est partie le 15 juin, sans souffrir et entourée d'amour. Elle nous a donné une leçon de courage et laissé des souvenirs inoubliables.
Si vous en avez les moyens, nous vous proposons de faire un don pour la fondation belge "101 Génomes", qui œuvre pour faire avancer la recherche sur le syndrome de Marfan néonatal, dont souffrait notre fille.
Paul Bénard et Margaux Lannuzel
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[EN]
Colette was born to the sound of Césaria Evora on a late November afternoon in the maternity ward of Lorient Hospital. Her little pout and first cries melted our hearts. The rest of her story was certainly not what we had imagined for her, but it was full of moments of joy.
The first ones took place in the hospital, where her strength and resilience impressed all the doctors. Colette opened her big black eyes, developed a taste for cuddles and enjoyed her first bottles, setting new records for millilitres every day. After two months, she had won over the entire staff, as well as turning us into doting parents.
Her return home was like a second birth. Colette smiled for the first time in our living room. She discovered the quays of Lorient, La Base and Les Halles de Merville from her pram, sometimes pushed by her grandparents, uncles and aunts or our friends who came to visit her. We even took a big trip together to the tip of Finistère, where Colette spent a weekend with her family and met one of her great-grandmothers.
Returning from hospital stays did not dampen her good spirits. Fascinated by the cardiac ultrasound screens, Colette started laughing between examinations. She didn't really admire the view of the Gulf of Morbihan during her helicopter trips, preferring to take advantage of the rocking vibrations to take long naps. She was a ‘cool’ or ‘nice’ baby, according to the doctors, who even came to believe that she would defy the prognosis for her condition.
In the end, there was no miracle, and Colette passed away on 15 June, without suffering and surrounded by love. She taught us a lesson in courage and left us with unforgettable memories.
If you are able, we invite you to make a donation to the Belgian foundation ‘101 Genomes’, which is working to advance research into neonatal Marfan syndrome, from which our daughter suffered.
Paul Bénard and Margaux Lannuzel
— Margaux
The Fondation 101 Génomes (F101G) is a patient-led initiative that aims to boost groundbreaking research in the field of rare diseases. F101G is hosted by the Fondation Roi Baudoin.
Our goal is to advance the understanding of the human genome to better treat rare diseases affecting children. We want to accelerate discoveries into new diagnostics tools and more efficient treatments.
To this aim, F101G is set to create a unique bioinformatic database that will unleash the full potential of genomics and artificial intelligence.
Our crowdfunding campaign “Impatient” wants to accelerate funding for research. We are “Impatient” because, when it comes to saving lives and improving the quality of life of people with a rare disease, there is no time to waste.
Gifts worth over 40 EUR are fiscally deductible.
The Fondation 101 Génomes (F101G) is a patient-led initiative that aims to boost groundbreaking research in the field of rare diseases. F101G is hosted by the Fondation Roi Baudoin.
Our goal is to advance the understanding of the human genome to better treat rare diseases affecting children. We want to accelerate discoveries into new diagnostics tools and more efficient treatments.
To this aim, F101G is set to create a unique bioinformatic database that will unleash the full potential of genomics and artificial intelligence.
Our crowdfunding campaign “Impatient” wants to accelerate funding for research. We are “Impatient” because, when it comes to saving lives and improving the quality of life of people with a rare disease, there is no time to waste.
Gifts worth over 40 EUR are fiscally deductible.
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