Help Casey Beat aHUS
Jacqui asks
So glad to hear that Casey has been stable for some time now and that she doesn't require funding for the drug and that her illness is no longer life threatening. It must be wonderful for you as a family. Will you be forwarding the donations you received to another child/children who actually are in a life threatening position and need the drug now? Would be good to know. Once again I'm happy to hear that Casey is running around and looking and feeling healthy and happy. X
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Lyn asks
Hi I read about your little girl Casey through Hukanui School. A friend of a friend has a daughter with the same condition. Tammy fought hard and was a key player in gaining funding through the Australian government for Solaris to be funded. She is a wonderful woman who may be able to give you advice and support. She travels between Australia and New Zealand regularly. If you are interested look up 'Biancas battle' 'Tammy Hamawai' on Facebook. Love and hugs to you and your precious little girl.
Mark
Hi Lyn, thanks for your message. It's great that the Australian government have come to the party our Nephew who is also 5 receives Solaris in Melbourne thankfully. Unfortunately it appears the NZ govt are not interested in doing the same as they have turned down 4 kids with aHUS applications. I will definitely look up Biancas battle thanks for forwarding me that.
Jacqui asks
Hi Mark and family, I've been following your story for awhile now and was wondering how your little girl is doing? Hoping you've raised enough money to get her started on the medication she so desperately needs.
Mark
Hi Jacqui, thanks for your message. We are a long way off starting the medication as don't have nearly enough funds. Casey is much the same not in remission, FFP infusions have been stopped as the Doctors believe they are not actually doing anything so she is being monitored closely with bloods and urine tests.
Alison asks
Hi Mark, I tried to call yesterday - maybe a bit late sorry. Shall we try and chat today. Let me know a good time. Best, Alison
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Alison asks
Hi Mark, my name is Alison Horwood, I have been a journalist and television producer for more than (gulp) 20 years. I hope you are doing ok, and Casey has had a good couple of days :) I write regularly for Woman's Day magazine and I'm keen to chat about doing a story on Casey, and the family's journey. You can get hold of me on alison_horwood@yahoo.com or my cell is 021 389 083. I have a bit of a mad day today - on and off planes, but you can always leave a message and I will call you back when I'm free. I really hope we get to chat - you have been through a lot and it would be good to raise awareness of this little-known condition - and tell of the resilience of your wee girl. Best, Alison
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