Forum ASBL Nos Enfants Cardiaques


 

[ Topic : microdeletion ]
Sujet : microdeletion Date : 13/10/2008, 21H41
Auteur :
leou
22q11

Message modifié le 13/10/2008 a 21H58, par leou
Sujet : Re : microdeletion 22q11.2 Date : 13/10/2008, 21H52
Auteur :
leou
Bonsoir, je suis la maman d'une petite fille agée de 5 ans qui a subi une opération à coeur ouvert en octobre 2007 et une vélopharingoplastie en mars 2008.Ces 2 interventions sont liées car ma fille est atteinte d'une microdeletion 22q11.2 qui est une malformation sur le chromosome 22.Si je vous écrit sur ce forum c'est pour avoir un peu d'aide concernant la microdeletion car nous l'avons detecte au mois de mars et je ne sais comment va évoluer ma fille .Merci d'avance

Message modifié le 13/10/2008 a 22H02, par leou
Sujet : Re : microdeletion 22q11.2 Date : 15/10/2008, 15H09
Auteur :
fansyl
Bonjour,
Puis-je vous demander comment va votre fille sur le plan cardiaque ?
Dans le cadre d'un colloque de l'association Relais 22 ( www.relais22.be) nous avons fait la connaissance d'une femme formidable, Anne Swillen, spécialiste de la microdélétion reconnue en Belgique et au-delà. Elle a une très belle approche du syndrome en suivant l'enfant dans son contexte global (en famille, en société, à l'école, etc) et elle a un très bon contact avec les enfants (et leurs parents). Elle travaille à la KUL à Leuven et elle est bilingue. N'hésitez pas à contacter l'association Relais 22, ils pourront vous donner plus de détails. Et si vous voulez rester en contact via le forum, c'est très bien aussi.
Je vous envoie plein de courage
Fanny
Sujet : Re : microdeletion 22q11.2 Date : 15/10/2008, 21H21
Auteur :
leou
Bonsoir et merci pour votre réponse.ma fille va très bien d'un point de vue cardiaque , c'est une petite fille plein de vie et tjs en action (danse,natation...)j'ai participé dernièrement à un colloque(26 avril 200coolqui m'a permis de comprendre mieux le syndrome. maintenant les questions que je me pose sont par rapport à son apprentissage scolaire et à sa vie .avez vous aussi un enfant atteint de la microdélétion?
Sujet : Re : microdeletion 22q11.2 Date : 16/10/2008, 08H13
Auteur :
fansyl
Notre petite princesse nous a quittés début d'année, sa pathologie cardiaque avait pris le dessus sur tout le reste. C'était une petite puce pleine de vie et nous sommes très heureux d'avoir pu vivre ce que nous avons vécu. Je suis contente pour et avec vous que votre fille se porte bien. Comment s'appelle-t-elle ?
Clara avait une microdélétion 22q11 diagnostiquée 3 jours après sa naissance, suite aux nombreux examens faits à notre arrivée en urgence à Sain-Luc puisque souvent les maladies cardiaques sont liées à un syndrome.
Nous avons vraiment cherché à rendre sa vie sociale la plus riche possible et des personnes comme Anne Swillen nous ont vraiment beaucoup aidés. Jimagine qu'elle devait aussi être présent au colloque de cette année.
Je vous dirais ceci : Ne restez pas avec vos questions, vos inquiétudes, entourez-vous de personnes compétentes (qui seront là tout au long du chemin, pas juste pour une consultation) mais sachez aussi que vous n'aurez jamais toutes les réponses. Le syndrome évolue tellement individuellement, avec des grades très différents d'un enfant à l'autre. Ne regardez pas trop tout ce que l'on peut trouver comme info sur Internet ou autre... regardez votre puce avec tout votre amour et votre confiance en elle. On peut se contacter par téléphone si vous le souhaitez mais je ne veux pas le mettre sur le forum. Je vais voir comment on peut faire.
Je vous embrasse.
Fanny
Sujet : Re : microdeletion 22q11.2 Date : 08/12/2016, 07H41
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : microdeletion 22q11.2 Date : 24/04/2017, 11H07
Auteur :
whn 123
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whn
Sujet : Re : Pas de sujet Date : 10/07/2018, 05H50
Auteur :
shenyuhanggyuogy607
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shenyuhang20180710
Sujet : Re : maman dun enfant cardiaque Date : 25/07/2018, 06H56
Auteur :
shenyuhangrduyrd745
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2018-0802y
Sujet : Re : maman dun enfant cardiaque Date : 03/08/2018, 04H23

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Meeniwo9471
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2018.0803W
Sujet : Re : maman dun enfant cardiaque Date : 07/09/2018, 11H34
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20189.7huangliyue
Sujet : Re : UBUHANUZI BWA MAGAYANE BURENDA GUSOHORA Date : 08/11/2018, 01H48
Auteur :
zhoyzhouyan88
2018.11.08zhouyanhua
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