maledicted malformation

vessels.jpg

A blue contrast has been instilled into my daughter’s beloved vessels, to discover an Arnold Chiari malformation in her head. Im my thoughts malformation souds like Mozart’s Maledicti, I proclaim requiem to her dreams about sportive achievements and healthy future life.

Błękitne krople kontrastu przenikają krew mojej córki.

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20 thoughts on “maledicted malformation

    • Hm. It’s not so easy to say. Her skull is to small and her brain doesn’t fit. cerebellum falls down, destroing slowly the spine. People are mentally fit (happily) but should learn to suffer :(. Undertaking excessive effort may cause instant worsening: paralysis or death. Finally, this all may not happen 🙂

  1. Oh stonka your daughter has chiari malformation disease which is a rare brain disease where the skull is to small and pushed downward on spine and so on and I’m sorry to hear this because I also have chiari malformation disease and i keep y’all in prayers because i know how painful it can be and hellish struggle to even live each day!!💖😢😇

    • I still wonder how it is really, because she has headaches every day, yet she is able to run and jump and laugh all the time. It must be tough, anyway. Sometimes she gots angry, may be when she gets tired and weak. Good luck to you, a lot of health and smile!

      • Yes I know because my daughter was like that to being active and all until chiari would knock her down and she wouldn’t play or be active so I understand where you are coming from…

  2. But sure do hope they find a cure because there’s to many chiarians dying unexpectedly and doctor’s don’t seem to know why or it’s related to chiari like EDS Ehlers-Danlos Syndrome and IH to and are you in any current support group’s to vent with her struggles like on Facebook? Because they have many great group’s on Facebook that helps with chiari malformation disease?

    • Yes I read posts of some, it helps. Personal stories are very helpful. Up till now the main trouble for me is visiting a number of doctors. As to my daughter, she just suffers plainly, and that’s all. Nothing to worry. Except for sudden death. Life will show, some children just grow out of Chiari 🙂

      • I hope she out grow chiari but that’s highly unlikely because once chiari is inside there’s no way getting rid of it and yes we have to worry about sudden death but see some chiarians cannot have a shunt placed in their skull because of so many thing’s like the location of one’s chiari and maybe to close to the brain stem.. Because see I got my chiari from my mother and so did my older brother Robert which his chiari malformation disease killed him in 2007 and he was only 37 at the time and see surgery isn’t a cure only helps with pain… 🙂

        As I hope your daughter gets better soon… 🙂

      • I would have hope, it is possible – this I was told by doctors growing out of chiari happens- but is extremely rare, a sort of miracle. Thirty seven, for me it’s a long time. I’ve red about young children passing because of this. But let’s don’t panic. Let’s enjoy what is possible now. May be someone finds a way to fix chiari.

  3. So sorry that it has happened to your daughter. My heart goes out to you all. Please enjoy what is possible, and do the best with your lives. Hope her symptoms are mild.

    • 🙂 Thank you. Now symptoms are not so dangerous, just headache. Some weakness sometimes, but also sometimes some strength. It is a big pain to see a beloved one suffering, but I know it is not as tough it could be. Looking from outside, she is a very pretty and healthy young girl. Sometimes I just grant myself a luxury to look only from outside 🙂

      • Some people have very mild symptoms, so let’s hope for the best. My daughter suffers from Meniere’s and it has an impact on the quality of her life, but one just learns to live with the symptoms.

  4. Oh, it is also a a very serious illness, I’m so sorry. But you are right, they got used to their symptoms. Finally, may be our children will grow up to be quite happy adults, fulfilled anyway, because health is only part of a success.

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