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 at sunne@bohring-opitz.org or complete our consent form. In addition to place of your child it is also possible to share your child’s name, a picture and/or your own website regarding parenting a child with Bohring-Opitz Syndrome.
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!
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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.
Laëtitia
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Bonjour Laetitia,
je m’appelle Marine, avec mon conjoint nous avons une petite fille qui est née le 1er décembre 2017, elle s’appelait Eva; elle est malheureusement décédée subitement le 10 février 2019 Nous venons tout juste d’avoir les résultats génétiques et le nom de son syndrome
Nous avons toujours du mal à croire que son décès est du au syndrome car Eva était en progrès constant depuis 14 mois et surtout elle n’avait jamais été malade avant cet horrible 10 février.
Nous avons eu la chance d’être très bien accompagnés par les équipes médicales à Lyon alors même qu’elles ne connaissaient pas le syndrome
Nous avons beaucoup de choses en place pour notre petite puce et ses progrès furent incroyables
Eva était 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 génétique sont vraiment incroyables
Ils nous ouvrent les yeux sur tellement de choses
Si vous le souhaitez, je ne sais pas quel âge a votre petit trésor je peux vous donner des infos sur ce qui avait aidé et ce qui avait été fait pour Eva ainsi que tout ce que l’équipe médicale avait mis en place. Lyon est un centre très réputé notamment sur la neuropédiatrie.
Sincèrement
Marine
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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.
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