Map “Children with BOS”

Bohring-Opitz Syndrome (BOS) is a rare disease. This map is an opportunity for families of children with BOS to meet and connect each other and maybe – one day that comes from meeting face-to-face.

We are rare, we are special – together we are strong!

Would you like that your child with Bohring-Opitz Syndrome has its own place on the map “Children with Bohring-Opitz Syndrome”? Please send us a message atĀ sunne@bohring-opitz.org or complete our consent form.Ā In addition to place of your child it is alsoĀ possible to share your child’s name, a picture and/or your own website regardingĀ parenting a child with Bohring-Opitz Syndrome.

4 replies to Map “Children with BOS”
  1. Louis is our bright star with his beautiful sister Saibh protecting him forever in their orbit together as brother and sister..we love you both so much!

    Liked by 1 person

  2. Hi,

    My name is Laetitia, I’m from Gap, in France. First, I apologize for my english which might not be very good…
    My baby girl […] has been diagnosed with BOS syndrom. She has many of the caracteristics of the syndrom, feeding issues.. she has been in the hospital since she was born. She has not seen her home yet.
    I was looking for help and information. Her dad and me are very sad and we do feel lost because of this syndrom. Many questions come to our mind like what’s going to happen to our little girl, how can we give to her the life she deserves? What does she need and many more.. I’ve read some of the family stories and theres a lot of joy and love but it also seemed to be a hard path…
    We have an other question, how many have died from this syndrom ? Because we are scared to lose her…
    We do not have this in France and I don’t know how to get in touch with the other french parents..
    Thank you so much for your help.
    Laƫtitia

    Like

    1. Bonjour Laetitia,

      je m’appelle Marine, avec mon conjoint nous avons une petite fille qui est nĆ©e le 1er dĆ©cembre 2017, elle s’appelait Eva; elle est malheureusement dĆ©cĆ©dĆ©e subitement le 10 fĆ©vrier 2019 Nous venons tout juste d’avoir les rĆ©sultats gĆ©nĆ©tiques et le nom de son syndrome
      Nous avons toujours du mal Ć  croire que son dĆ©cĆØs est du au syndrome car Eva Ć©tait en progrĆØs constant depuis 14 mois et surtout elle n’avait jamais Ć©tĆ© malade avant cet horrible 10 fĆ©vrier.
      Nous avons eu la chance d’ĆŖtre trĆØs bien accompagnĆ©s par les Ć©quipes mĆ©dicales Ć  Lyon alors mĆŖme qu’elles ne connaissaient pas le syndrome
      Nous avons beaucoup de choses en place pour notre petite puce et ses progrĆØs furent incroyables
      Eva Ʃtait une petite fille incroyable, depuis que nous connaissons sa maladie nous sommes encore plus admiratifs et fiers de notre petit ange
      Nos enfants atteints de maladie gƩnƩtique sont vraiment incroyables
      Ils nous ouvrent les yeux sur tellement de choses
      Si vous le souhaitez, je ne sais pas quel Ć¢ge a votre petit trĆ©sor je peux vous donner des infos sur ce qui avait aidĆ© et ce qui avait Ć©tĆ© fait pour Eva ainsi que tout ce que l’Ć©quipe mĆ©dicale avait mis en place. Lyon est un centre trĆØs rĆ©putĆ© notamment sur la neuropĆ©diatrie.

      SincĆØrement

      Marine

      Liked by 1 person

  3. Hi my name is ashly an I’m proud to be apart of this amazing group myself and my husband have found much relief that we finally know what’s going on with our baby boy Liam it took us 10 months to find out Liam had BOS but now that we know it’s been easier to deal with an know that Liam is very special an we would be lost without him. Liam has a big brother and yes such a huge help with him and it’s amazing their bond between the two of them is beautiful even though they are 7 years apart.

    Liked by 1 person

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