Join Nora's Army
Life saving treatment for our darling NoraCanterbury
In August 2018 5 year old Nora was diagnosed with hepatoblastoma, cancer of the liver that occurs in 1 in 1 million. Unfortunately, Nora's cancer was also found to be in her lungs. In the last 14 months Nora has gone through 9 rounds of chemotherapy which caused the usual side effects but it also caused permanent hearing loss, she has had 3 surgeries including removing 60% of her liver, her gallbladder and half of one lung. Nora now has over 850 beads of courage.
It was found the likely cause of Nora's cancer was a TP53 gene mutation, this gene helps suppress the growth of tumours. This now makes her susceptible to a large number of cancers at much higher risk than the general population. Heartbreakingly, Nora's Dad and little 3 year old sister were also found to have this and are now undergoing testing for cancer.
Nora's liver remains cancer free but the disease in her lungs is proving to be stubborn. Nora, now 6, has exhausted all of the curative treatments available in New Zealand but she has been accepted into a CAR T cell trial in Texas which is her last chance for a cure. The trial is part funded but we need your help with the rest. The costs including the unfunded portion, accommodation and flights is estimated at $210,000 NZD but this could change if Nora had to be admitted.
It takes a village to raise a child but we need an army to save ours.
Use of funds
Unfunded portion of the treatment, accommodation, flights and expenses in Texas. If things changed and we no longer required the money we would use some to make Nora's last days amazing plus create a charity in her name to assist families with cancer.
Nora is so well. She continues to be healthy and has been enjoying herself when we are not at the hospital.
The T cells are showing in her blood which is great news and first indications are they are dropping Nora's AFP marker which is even better news.
Her biopsy is scheduled for Thursday and then we return home December 14th.
Long may the good results continue
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This page was created on 20 Sep 2019 and closes on 20 Dec 2019.