As the title suggests, this is a support group for NiQi Tanja During a wonderful young woman with a rare genetic disease
called Cystic Fibrosis. Cystic fibrosis is a disease passed down
through families that causes thick, sticky mucus to build up in the
lungs, digestive tract, and other areas of the body. It is one of the
most common chronic lung diseases in children and young adults. It is a
life-threatening disorder.
For more information about CF (Cystic Fibrosis) follow the link at the bottom of the post.
The only way of effectively living a normal life with CF is to get a
double lung transplant, a very specialized and thus very costly
procedure. NiQi needs this transplant more than anything else at this
moment.
The main problem she has though is money:
The procedure is very specialized, so specialized that only two
hospitals in South Africa actually do it. These hospitals being private
hospitals. And she has to be on a medical aid or won't even be considered for transplant. This is problematic since the medication she
needs to live costs about R40 000/month on its own, not to mention that
she needs to get on the list ASAP.
Then to give an idea of the massive
amounts of money needed to undergo this operation, lets just start by
saying the minimum amount of money required is at least 1.3 million
Rand, this is the main reason why a medical aid is needed.
Medical aid is costing just under R5000 a month. And then to have to pay the Diesel fees and etolls for our trips to and from hospital and clinic.
The fund is to help pay for all these monthly costs pre-transplant and any extras that will not be covered by the medical eg: Creon (digestive enzymes) NiQi needs between 30-40 per day, and the medical aid will only pay for 8. That leaves us with a payment of R14 000 a month just for one medication.
There will also be costs post transplant for meds and doctors visits. The main reason is to get as much money into the fund, so if there are any shortfalls or co-payments with the transplant, we have the money.
Her
family has gone through a very rough patch these past few years, and
though they wish they could do everything for their daughter,
financially they cant. That is where you guys come in. We need to spread
awareness of Cystic Fibrosis and the impact it has on the lives of the
people who life with it. This way we can also help out NiQi in getting
the LIFE SAVING operation that she needs to live a near normal life.
A bank account for donations has been opened ( see under donate tab) and every bit helps.
Please add all your friends, and your friends, to this group.
Thank you all in advance!
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/
