Hall of Donors

PVNH Support & Awareness currently supports more than 160 families worldwide. Your donations allow us to produce educational and awareness materials and will allow us to register as a foundation. Thank you!

2 Responses to Hall of Donors

  1. ginette smith says:

    Hi,

    My daughter Katie has bilateral pvnh which is not a filamin A mutation.
    Katie is 16 and had developmental delay, severe hypotonia as a baby and is still hypotonic, can’t walk far without tiring and is waiting for an op on her wrist which dislocates every time she twists it. She has hypermobile joints and suffers pain in knees, hips, wrists and ankles. I haven’t mentioned everything we’ve through because the list is too long but I hope this gives a reasonable picture of our daughter.

    She has also had some unexplained seizures which have not been classified as epileptic. Despite all this she is a cheery girl and a truly beautiful and kind hearted young lady. If we could connect as a family with anyone out there who knows what we are going through I think it would really help. If we can help and support anyone else we would be glad to.

    Thank you for your time,

    Ginette and Katie Smith

    • Yolaine Dupont says:

      Hi Ginette and Katie! Apologies for the delay in getting back to you, my PC had some healt issues of it’s own! I have sent you a private message by email. Looking forward to hearing from you. Yolaine

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