Facebook   Twitter    e-mail newsletter    YouTube    RSS Feed    Android App    iPhone and iPad App     BlackBerry App    


Page 2 of 3 FirstFirst 12 3 LastLast
Results 16 to 30 of 36

Thread: Help us to save this little girls' life...

  1. #16

    Default

    Quote Originally Posted by LancelotSA View Post
    Again, my offer stands for you to PM me and communicate with the mother directly.

    Of course this would be a worthless exercise as you had no desire to contribute anything even if it was genuine. That is fine but then don't go making claims that it is not genuine and then continue to do so even after I have made an offer for you to find out first hand if it is or not.
    Okay, I'm telling you what I'm gonna do because talking to 'the mother' is certainly no proof. So I am going to call the St Augustine Hospital where Mine Vosloo is apparently taken care of (also no hit on google for her name although she is apparently suffering from such a rare disease and would most probably be mentioned in one or the other news article)

    If it turns out I was wrong and there is really a Mine at this hospital suffering from HUS I will immediately go and donate. Is that offer good enough?

  2. #17

    Default

    Sorry, I'm having to agree that something isnt adding up. The post says she has HUS, which isnt life threatening in 90% of cases and is generally only fatal if it causes kidney failure. In which case, our money would be going to dialysis machines.

    However, Soliris (if thats what was meant), treats PNH. Its the brand name of a drug called Eculizumab (notice the spelling mistake in the OP). If that was my daughter, you bet I would get the right disease and right medicine, hence I find it suspicious.

  3. #18
    Banned
    Join Date
    Aug 2007
    Location
    Stunning Africa
    Posts
    14,713

    Default

    Quote Originally Posted by Anony-mousse View Post
    Okay, I'm telling you what I'm gonna do because talking to 'the mother' is certainly no proof. So I am going to call the St Augustine Hospital where Mine Vosloo is apparently taken care of (also no hit on google for her name although she is apparently suffering from such a rare disease and would most probably be mentioned in one or the other news article)

    If it turns out I was wrong and there is really a Mine at this hospital suffering from HUS I will immediately go and donate. Is that offer good enough?
    Cool, do that and give us feedback.

  4. #19

    Default

    Quote Originally Posted by Ancalagon View Post
    Sorry, I'm having to agree that something isnt adding up. The post says she has HUS, which isnt life threatening in 90% of cases and is generally only fatal if it causes kidney failure. In which case, our money would be going to dialysis machines.

    However, Soliris (if thats what was meant), treats PNH. Its the brand name of a drug called Eculizumab (notice the spelling mistake in the OP). If that was my daughter, you bet I would get the right disease and right medicine, hence I find it suspicious.
    That's my point.

  5. #20
    Banned
    Join Date
    Aug 2007
    Location
    Stunning Africa
    Posts
    14,713

    Default

    Any feedback yet?

  6. #21
    Super Grandmaster
    Join Date
    Jul 2008
    Location
    The Big Wide World
    Posts
    5,073

    Default

    Quote Originally Posted by Anony-mousse View Post
    Okay, I'm telling you what I'm gonna do because talking to 'the mother' is certainly no proof. So I am going to call the St Augustine Hospital where Mine Vosloo is apparently taken care of (also no hit on google for her name although she is apparently suffering from such a rare disease and would most probably be mentioned in one or the other news article)

    If it turns out I was wrong and there is really a Mine at this hospital suffering from HUS I will immediately go and donate. Is that offer good enough?
    Yes it is good enough. Please put this scepticism to rest.
    Last edited by TheHiveMind; 04-05-2010 at 04:21 PM.

  7. #22

    Default

    So due to my healthy skepticism, who can blame me for that, I naturally had to doubt the seriousness of this website. But even the greatest minds made mistakes so I don't feel so bad for finding this donation request fishy but at the same time I do admit if I was wrong about things and I retract my statement by telling you all that I did indeed get hold of Mine at the St Augustine Hospital in Durban. I talked to her for a while, she told me about the medication that they try to get from overseas and while she was on the phone she asked the sister what the condition is called, which she answered was HUS.

    Anywho, I was wrong, this is a real medication request, probably the only real one I will ever come across.

    So I will now contribute towards the purchase of her medication

  8. #23
    Banned
    Join Date
    Aug 2007
    Location
    Stunning Africa
    Posts
    14,713

    Default

    Quote Originally Posted by Anony-mousse View Post
    So due to my healthy skepticism, who can blame me for that, I naturally had to doubt the seriousness of this website. But even the greatest minds made mistakes so I don't feel so bad for finding this donation request fishy but at the same time I do admit if I was wrong about things and I retract my statement by telling you all that I did indeed get hold of Mine at the St Augustine Hospital in Durban. I talked to her for a while, she told me about the medication that they try to get from overseas and while she was on the phone she asked the sister what the condition is called, which she answered was HUS.

    Anywho, I was wrong, this is a real medication request, probably the only real one I will ever come across.

    So I will now contribute towards the purchase of her medication
    Thanks for that.

    Great to hear you got to speak to her personally. I would not have expected that.

  9. #24

    Default

    Quote Originally Posted by LancelotSA View Post
    Thanks for that.

    Great to hear you got to speak to her personally. I would not have expected that.
    Believe me, me neither

  10. #25

    Default

    This sounds like a case for House
    A Pitbull is a small dog with a big heart. But if provoked will pounce without warning and cause large amounts of hideous damage.

  11. #26
    Super Grandmaster
    Join Date
    Jul 2008
    Location
    The Big Wide World
    Posts
    5,073

    Default

    *bump*

  12. #27

    Default

    I am very shocked to see this. I am Miné Vosloo's step-mother and she is in fact in St. Augustine's hospital since October 2009. Her father and I live in Pretoria and just returned from visiting her in the hospital this weekend. This child is really sick and needs the medication very urgently. We are trying everything in our power to help raise the funds. You are still welcome to call St Augustine's hospital and speak directly to her doctor - he is Prof Bhimma. He will be able to clarify the confusion regarding the name of the medication. They are still performing tests on Miné daily and to be honest, we are still not exactly sure what has caused this dreadful disease but suspect that was caused by contaminated take away food Mine consumed last year.
    I have created a facebook group called "Save Miné" and her brother created one called "Mine' Vosloo" - please feel free to view messages from real people in our lives and there are photo's of her.
    If you would like to contribute - please visit the www.Dreamz7.co.za website or the facebook group where you can find the bank details.
    If you don't feel you can contribute financially, all the prayers also help. We get our strength to get through this from Him and we trust Him with our little girl.
    Love
    Yolanda Vosloo
    (very concerned stepmom)
    Last edited by Yola; 18-05-2010 at 12:47 PM. Reason: typing error made

  13. #28

    Default

    Her father and I said the same thing while watching House last night. If only he really existed, we would have made a plan to get her to him and his team asap... But we are real people living in the real world with a really sick child.

  14. #29

    Default

    I thank you from the bottom of my heart - on behalf of her parents and family who love her dearly. I am glad that you made the effort to contact her and once you meet her, you would not be able to leave there without a broken heart.. and Miné would have stolen a little part of it. She is such a precious brave little girl and have gone through so much already. You are a blessing and I pray that God will bless and protect you and your loved ones.
    Love
    Yolanda Vosloo
    Please join the facebook group so you can see the photo's we took this weekend...

  15. #30

    Default Update from Dr Bhimma

    22 April 2010 - Update from Dr Bhimma

    Mine Vosloo (DOB 4 March 2003)

    This child has a rare disorder due to a mutation in a set of genes that control the complement system. The disease Mine has is called 'ATYPICAL HAEMOLYTIC SYNDROME (HUS)'. Usually HUS is caused by an infection which in developing countries is commonly from a bacteria called Escherichia Coli (0157:H7) but in developing countries such as in South Africa is due to a bacteria called Shigella dysenteriae type 1 that presents with a bloody diarrhoea (dysentery). In both the above cases the HUS is caused by release of a toxin from the bacteria called Shiga Toxin. In Mine's case although an infection is likely to have precipitated her illness, she appears to have an ATPICAL form of HUS in that (1) shiga toxin was not isolated from her stools, (2) she has a relapsing form of the disease with more than 4 relapses from her first presentation, and (3) she has a persistently low serum complement level (C3).

    Atypical HUS is commonly due to a genetic mutation in the complement genes or to the production of antibodies to the complement proteins. It is often inherited as an autosomal recessive condition but in several cases these mutations in the genes are sporadic and do not demonstrate an inheritance pattern. Complement proteins in the body bind to antibodies that coat foreign proteins (such as that from bacteria, viruses etc.) and complement makes these foreign proteins more susceptible to removal by macrophages etc. Unfortunately in patients with these defects the abnormal complement proteins also bind to kidney cells and these results in damage to these cells leading to severe inflammation with kidney failure. There is also an attack on the red blood cells and platelets. The former being to fragment as they pass through small inflamed vessels and due to the clotting of blood in the small vessels the platelets in the blood are used up resulting in patients having a low platelet count. Hence HUS (classical or atypical) is a triad of (1) haemolytic anaemia (breaking down of red blood cells with formation of red cell fragments), (2) low platelets (all used up in the clotting found in small blood vessels) and (3) kidney failure (which initially may be acute but with persistent attacks becomes chronic) leading to the need for dialysis. Kidney transplantation in this condition may also be risky in that there is a high risk of recurrence of the disease in the transplanted kidney.

    Mine will therefore require long-term dialysis and clensing of her blood (plasmapheresis). Treatment using a new agent called Ecluzimab (SOLARIS ®) will be useful to block the production of abnormal complement proteins and prevent further damage to her kidneys and improve her blood counts.

Page 2 of 3 FirstFirst 12 3 LastLast

Bookmarks

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •