Donna urgently needs our help to fund her last ditch hope of unfunded treatment for her chronic mast cell disorder
Manawatu / Whanganui
In the last 5 years Donna has beaten breast cancer but has developed a debilitating mast cell disease which can trigger allergic reactions to just about anything.
Not only has she experienced episodes of life threatening anaphylactic shock, she has also suffered significant side effects from this condition resulting in 20 hospital admissions in the last 2 years and it has progressively got worse.
She has developed severe diabetes which means that she has to inject insulin multiple times a day. Because she takes so many steroids her skin has become paper thin and that the slightest injury or pressure on her skin results in further allergic reactions causing bruising, swelling and inflammation She hasn't had a full night's sleep in over 2 years but struggles to use the CPAP machine because of her fragile skin and an allergic reaction to that.
She often breaks out in massive rashes all over her body that result in uncontrollable itching and swelling in her lips and eyes from angioedema
She suffers from severe fatigue and this impacts on her ability to work all the while trying to maintain some kind of a normal life.
She has tried a number of medications with no success however there is one option left to her but that medication is not funded. There is a really good success rate in others that have used this drug but unfortunately it is not readily available in NZ nor is it funded. Treatment is required monthly for the rest of Donna's life at a cost of $1400 per treatment monthly. Donna's first dose was successful and now she is due for her next dose which is now ongoing on the 20th of each month.
Donna lives in Palmerston North but the treatment must be administered in Wellington initially so we'll also need help to pay for travel and accommodation in Wellington.
Donna is my 48 year old baby sister who has a loving family comprising her husband and two sons aged 24 and 14. She has shown immense courage and spirit over the last 5 years and we all want to provide her with every opportunity to try to claw back her quality of life.
Funds raised will be used to cover the cost of the first few treatments and if they are successful then we will be lobbying to get this medication funded long term.
Little setback 22 January 2018
Hi everyone,
I really appreciate all the support I have received and keep receiving, I cant thank you all enough.
Unfortunately I was 10 days late having my latest injection due to xmas period and lack of funds, so unfortunately I am symptomatic again, and back up to 30mg of steroids daily again, until I can receive a urgent dose of medication asap.
At least now I know I only have to hold on and there is a solution, so the sleepless nights are not forever, and thats gives me hope.
Thank you once again Vicki for your love and support xx
I cant thank you enough for your continued support. It is so appreciated xx
Thank you so very much for your support. I am sooo grateful xxx
Thank you Sarah, I cannot thank you enough for your continued support xxx
Thank you so very much Lynn and Dave. I really appreciate your support xx
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