jeudi 11 octobre 2007

Lettre des parents de Mathilde à Nicolas Sarkozy

« Deux enfants qui attendaient comme notre fille une greffe cardiaque sont mortes en août et en octobre à l’âge de 20 mois et de 3 ans, faute d’un petit coeur disponible à temps. Toutes nos pensées vont à ces petits anges et à leurs parents.

Aujourd’hui notre fille est atteinte d’une maladie cardiaque très grave. Sa vie est menacée à chaque instant. Je ne sais pas combien de temps elle survivra encore. Elle est inscrite sur la liste depuis le mois de juin 2007. Seule une greffe de coeur pourra la sauver.

Nous sentons bien le souffle aigre de la fatalité et l’échéance qui approche.
Il n’y a pas d’organe disponible, alors à quoi bon se battre ? Il n’y aurait rien à faire.
Nous n’acceptons pas cette renonciation annoncée, car des solutions existent. Et nous voulons poser cette question simple : qu’attendent les pouvoirs publics pour mettre enfin en oeuvre les mesures qui s’imposent ? Et dont on sait qu’elles sont efficaces ? En Espagne, pas très loin de chez nous…
Nous voulons des actes, pas des paroles.

Pourquoi l’Espagne est-elle parvenue à faire chuter le taux de refus de prélèvements d’organes en dessous de 15 %, alors que la France est confrontée à cette réalité consternante de plus de 32 % de refus, inchangé depuis des années, dans l'autosatisfaction ronronnante de nos autorités de santé ?
Pourquoi l’Espagne atteint-elle le chiffre de 35 donneurs prélevés par million d’habitants alors que la France s’est hissée péniblement à 23 ?
Nous voulons des réponses. Nous ne voulons plus que nos enfants meurent dans l’indifférence. Nous voulons sauver Mathilde et pour y parvenir nous avons besoin du soutien de l’opinion publique.
Car la solution, nous la connaissons. Il faut qu’en France, comme cela a été le cas en Espagne, une volonté politique forte s’exprime, au plus haut niveau de l’Etat.
C’est pourquoi, nous demandons instamment à Monsieur Nicolas Sarkozy de déclarer le don d’organes et la greffe Grande Cause Nationale.

Nous voulons qu’un véritable dispositif d’information de la population soit mis en place, pour que plus personne ne puisse dire « je ne savais pas » et que la loi sur le don d’organes puisse enfin être appliquée.
Nous voulons que des moyens supplémentaires soient attribués à la chaîne du prélèvement à la greffe, et que l’ensemble des établissements hospitaliers soient mobilisés. Il n’est plus supportable que certains hôpitaux ne se sentent pas concernés.
Nous voulons que le travail remarquable des équipes de prélèvements et de transplantation soit mieux reconnu et valorisé. Pour qu’une greffe puisse avoir lieu, de longues heures d’un travail extrêmement difficile sont nécessaires, de la part de très nombreux intervenants, qui s’engagent tous avec un dévouement total.
Paradoxalement, un tel engagement permettrait immédiatement des économies substantielles pour notre système de santé. Savez-vous que le maintien en survie d’un malade sous coeur artificiel coûte des sommes énormes en comparaison du prix d’une greffe, pour une rémission de seulement quelques mois ? Que si l’on greffait toutes les personnes dialysées qui peuvent l’être, 600 millions d’Euros seraient économisées chaque année et des souffrances énormes épargnées ?
Que dois-je répondre, Monsieur le Président, à Mathilde quand elle me demande « maman, c’est quand mon nouveau coeur ? »
Il faut que la société Française toute entière se mobilise pour mettre fin à ce scandale insupportable de la mort de nos enfants, parce que les pouvoir publics ne font pas ce qu’il faut pour leur donner accès au traitement qui les sauverait.
C’est pourquoi nous invitons tous nos compatriotes à signer l’Appel à la solidarité nationale de Mathilde. Nous remettrons personnellement cette pétition à Monsieur le Président de la République.
Vous pouvez également adresser à Mathilde vos messages de soutien.
Mathilde, par avance, vous remercie. »

Rachida et Christian Bertrand, parents de Mathilde

93 commentaires:

Anonyme a dit…

Cette lettre me donne des frissons.Quel courage, quelle force, je vous admire.

Une pluie d'étoiles pour toi princesse Mathilde

Avec toute ma tendresse

Audrey

Anonyme a dit…

je suis de tout coeur avec vous...
J'attends moi-meme un coeur...depuis...presque 14 mois!!et j'ai 42 ans. J'espère que ce greffon viendra a temps. Mais s'il fallait choisir....je preferai que votre petite puce ait son coeur, moi, j'ai deja eu la chance d'avoir tant d'années de vie (et d'avoir ete deja operée deja 3 fois a coeur ouvert)
Courage, je garde votre petite Mathilde dans mon coeur, mes pensées et mes prieres
AgnesZ

Anonyme a dit…

je t'embrasse très fort petite pricesse Mathilde.
Landréa (enceinte d'un p'tit qui a mal au coeur)

Anonyme a dit…

reponse a la question de mathid...c est qd un autre petit enfant trepassera !!
quelque part meme si je comprends votre desespoir votre desir ca me choque enormement
etes vous prete vous a ceder en cas de malheur votre fille etes vous prete a offrir ses yeux, ses poumons ....?
les gens qui refusent ont des parents eplorés brisés vous devriez le comprendre passer outre leur desir c est lamentable
désolée de ne pas signer

aline feuvrier boulanger a dit…

Chère RACHIDA, chère Mathilde,

c'est avec grande émotion que j'avais vu votre reportage sur m6 et que, une fois de plus, mon coeur à été meurtri.. connaissant trop bien la douleur des proches mais surtout du malade, j'ai du mal à voir tant d'enfant souffrir ,si jeunes.. l'attente d'un trésor : un organe, cadeau inestimable qu'est la vie, ne sachant jamais de quoi demain sera fait et ,combien de battement notre coeur malade nous accordera encore..
je milite pour le don d'organe comme tant de gens à travers la France pour qu'il devienne un réflex... pour qu'on ne trépasse d'un manque d'information.

je prie pour la petite Matthilde et tout ces enfants qui souffres un peu partout dans le monde.

de tout coeur

Aline Feuvrier Boulanger

Anonyme a dit…

Bonjour
Je comprends votre combat, je suis passée par là. Ma fille est partie suite à une greffe du foie. A l'époque, je n'avais pas réalisé l'importance de ce qu'impliquait le mot greffe. En vieillissant j'ai compris que pour sauver mon enfant il fallait qu'un être trouve la mort. Elle avait 5 ans 1/2. Malgré l'échec de cette greffe, j'ai beaucoup culpabilisé par rapport à ma fille et pour le donneur.. Cela fait 16 ans aujourd’hui et si c'était à refaire, je la laisserai partir car sa fin fût très douloureuse.. Le don est formidable en soit, mais ne demander pas aux gens de se sentir obligés de faire ce geste, je souhaite vivement que votre fille puisse grandir auprès de vous mais s'il fallait demander quelque chose à nos politiques, c'est de mettre davantage de moyens financiers entre les mains des chercheurs afin qu'ils puissent développer des techniques qui permettraient de fabriquer des cellules souches saines à partir des cellules malades du porteur de la maladie et par conséquent de soigner l’organe malade. Je pense que la greffe n'est qu'une des solutions possibles à la guérison et que celle-ci n'est pas une finalité en soit. Il faudra bien recourir à d'autres méthodes pour sauver les gens dans l'avenir car les gens sont de moins en moins enclins à donner leur corps à la science et en grande partie à cause de la mauvaise image que véhicule la médecine en générale, surtout en milieu hospitalier. Les patients sont devenus des clients, il n'y a plus vraiment de profession de foi, le sermon d'hypocrate est devenu le sermon « d'hypocrites » ..... Je ne généralise pas mais la médecine d'aujourd'hui est très préoccupée par son compte en banque. Votre préoccupation aujourd'hui est de sauver votre fille et cela, je peux le comprendre. Malgré mon vécu, je ne suis pas persuadée du bien fondé de ces greffes, le clonage serait une meilleure solution... Mais il y a tant d’obstacles à franchir !!! Le clonage dans ma définition serait de pouvoir prendre les cellules souches de la personne malade ou d'une personne compatible et de pouvoir créer de nouvelles cellules « réparatrices ». Je ne pense pas que ce soit dans le domaine de l’utopie, un jour les techniques médicales y arriveront mais donnons leur les moyens financiers d'y arriver... C’est cela qu’il faudrait dire à nos politiques, de permettre le développement de nouvelles recherches, d’installer les chercheurs dans des conditions de travail différentes de celles de Pasteur, car pour certains, ce ne sont pas des laboratoires qu’ils ont, mais des anti-chambres, des salles obscures et sans technicité. Même le chauffage y est parfois absent. Un comble dans un pays aussi riche que le nôtre… Ne laissons pas partir les cerveaux dans d’autres pays, faute de moyen. Les politiques ont une très grande responsabilité dans le fait que les meilleurs diplômés de médecine vont faire leurs recherches hors de France, entre autre, aux U.SA… Une vraie hémorragie…..
Sur ce, j’adresse une tendre pensée à Mathilde qui n’a rien demandé et qui se bat tous les jours pour vivre, que son enfance soit préservée et que sa vie soit belle et heureuse...
Une mère bouleversée par son combat.

Fanette a dit…

Avec votre autorisation, je souhaiterai reprendre cette lettre sur mon blog pour une grande diffusion. Merci, courage petite famille ;-)

Sandra a dit…

Réponse à Mr ou Mme Anonyme du 25/10/07 à 17h32

La parole est d'argent mais le silence d'or

A bon entendeur...

Anonyme a dit…

réponse à fanette

non, je ne souhaite pas que vous diffusiez mon message sur votre blog, merci de respecter ce choix.

Christel a dit…

Je pose le lien de ce blog sur le mien, dans l'espoir de pouvoir vous aider. J'ai vu le même regard dans les yeux de mon fils, dans la même situation, il va avoir 4 ans bientôt. J'ai fais un autre choix, mais nos raisons sont les mêmes.
Je recopie votre pétition, l'imprime et la diffuse, j'espère que les signatures sur papier ne vous dérangent pas.

Vous avez mis sur votre courrier tout ce que j'aurai aimé dire à notre président à ce sujet.

N'ayant pas trouvé de lien vers une adresse mail sur votre site, pouvez vous me contacter sur ma boite mail perso (chapodpaille@tiscali.fr) pour que je puisse savoir s'il est possible d'envoyer les signatures à la Fondation Greffe de Vie
27 rue du Chemin Vert
75011 PARIS

Anonyme a dit…

Une lettre qui en dit long sur les progrés qui restent à faire en matière d'informations mais aussi des mentalités...On ne peut qu'admirer votre courage et la détermination de vouloir faire bouger les choses....
Avec toute ma tendresse

Audrey a dit…

Une pensée pour votre famille.
Je suis avec vous.
Comment va Mathilde aujourd'hui?
En lisant un journal, j'ai vu qu'à Dijon avait été posé un coeur artificiel.Cette possibilité s'offriait elle aussi à Mathilde?

Douces Pensée

Audrey


audrey68300@hotmail.fr

Ana a dit…

Tout d'abord grand courage à vous et notamment à Mathilde.
Je trouve votre lettre fantastique. Il est temps de crier à voix haute contre la mesquinerie qui habite encore trop de têtes, incapables de penser aux autres de manière naturelle et désintéressée.
La question pourtant est très simple: est-ce que tous ceux qui s'opposent au don, le feraient aussi si c'était à leur tour de recevoir le précieux organe?
Combien de souffrance encore devons-nous voir défiler avant d'ouvrir les yeux?
Quand est-ce que nous allons finir avec des idées, des mentalités directement venues du Moyen Age?
Savez-vous que chacun d'entre nous a plus de chances d'être un jour receveur que donneur?

Oui M.Sarkozy, peut être pourriez-vous dédier un petit peu de temps à un problème de santé publique numéro 1 qui nous concerne TOUS au lieu de vous vanter autant de votre propre personne.
Vous vous voulez révolutionnaire, efficace? En voici une bonne occasion de le prouver (n'oubliez pas que vous aussi êtes concerné)

Ana

Anonyme a dit…

salut mathilde sa ca bien tu sai j ai ete sur internet est j ai t-rouvé cette photos et j ai pleuré car j ai eu inpeupré la meme chose je me sui fait operé du coeur et des hanches a 13 mois

Anonyme a dit…

mathilde j ai oublier de te dire jespere que tu vas bientot sortir de l hopital car moi je sui rester pendant un bon mommen bon chance si tu veux je peux te donné son site labelletitine@live.fr

Bernard a dit…

J'ai une profonde pensée pour Mathilde la petite princesse au grand COURAGE ainsi qu'à sa famille .

Gros bisous

Bernard

Anonyme a dit…

courage petite puce.je pense très fort à vous trois.En attendant que la recherche avance et que les mentalités évolues (nb en ce qui concerne le clonage des cellules souches)j'espère que ce petit coeur tant attendu viendra.bien que je sois dans l'impossibilité de faire don du mien étant lui aussi abimé je compte faire ma carte de dons.Je suis très choquée du message datant du 25 octobre 2007 à 17h32 malheureusement des enfants décèdent brutalement en pleine santé on n'y peut rien alors si leur court passage sur cette terre peut aider d'autres à avancer dans la vie comme eux l'auraient fait ben oui si à l'heure d'aujourd'hui c'est la solution pour que des enfants comme Mathilde grandissent grâce à ces petits anges alors je signe.la perte d'un enfant il n'y a pas pire souffrance pour des parents mais elle est égale à celle des parents impuissants devant leur enfant malade qui attend non pas qu'un enfant "trépasse" (ça me glace le sang)mais qu'un petit coeur revive dans le corps de leur enfant puisque le premier petit corps s'en est allé beaucoup trop tôt...grosses bises à vous trois

Anonyme a dit…

Cette jolie Princesse souffre très probablement d'une maladie extrêmement rare te la maladie de "BARTH" du nom du professeur qui l'a découvert. Pour ma part, je vous souhaites BEAUCOUP de courage et de succès.

Jean Barcelone

Anonyme a dit…

Mathilde,
Tu es unique. Tu n'as pas l'âge de nous donner des leçons de vie et pourtant tu nous en donne... oh oui tu nous en donne...
Tu as tout compris de la vie.
Je pense bien à toi ma chérie

Anonyme a dit…

J'ai été trés émue par votre diffusion à la tv , courage à vous surtout à la petite Mathilde qui donne beaucoup d'espoir aux autres petits(es) comme elle ;
Je me suis permis de mettre votre pétition sur mon blog http://skyrockarine.skyrock.com/
afin de toucher encore plus de personnes et je ferai aux autres blogs aussi gros bisous à vous trois

Anonyme a dit…

Bravo Mathilde pour cette leçon de courage. J'espère pour toi que cette greffe va vite arriver et il ne faut pas avoir peur comme le dit ta maman... les médecins sont des magiciens. bon courage à vous trois

k-lydie a dit…

MAtilde tu es une petite fille très courageuse,je vais prier pour toi,ne perds pas d' éspoir le bon Dieu va t'envoyer un coeur tout neuf,je te souhaite de guerrir très vite ma puce,bon courage.

Brigitte Mazieres a dit…

Mathilde je pense très fort à toi depuis que je t'ai vue à la TV.J'espère que tu auras un nouveau coeur bientôt et je te souhaite beaucoup
de courage pour supporter la maladie et l'attente.
Je te félicite pour ton courage,je t'embrasse et je t'accompagne par la pensée dans ton combat je t'embrasse de Brigitte

Anonyme a dit…

un Gros calin à toi Mathilde ,J espère que tu auras bientot un petit coeur tout neuf ,bise.
Un papa qui se sent concerne.

Anonyme a dit…

Bonjour à vous tous
Nous espérons que vous vous portez tous le mieux possible, à chaque fois que nous vous apperçevons, nous pensons énormément à vous, nous avions eu, énormément de chance de vous croser un été en tourraine, vous étiez en face de notre mobil home, et nous avons eu le plaisir de voir l'intélligence, l'éveil et surtout la joie de vivre de votre petit bout de femme.
Nous vous souhaitons à tous les trois beaucoup de chance pour la suite et nous espérons que vous aurez l'occasion de repasser en tourraine avec une mathilde "toute neuve".
Bien à vous
Une famille qui pense bien à vous.

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