Last spring I was so happy and triumphant about our Elisa Banicki, a girl with a rare terminal Niemann-Pick Disease, Type C.
We were sure we won the battle for her medication to be re-funded by the Polish Socialized Medical Care. A positive decision on the part of the Polish Medical Authorities was made last spring. The re-fund plan was to be introduced last June, then August, then October, then November. Now we know it will not be introduced at all.
In the meanwhile there were elections, re-organizations, exchange of bureaucrats and we lost.
Everything has to be started all over again. It looks like the hope of the local system is that the needy will eventually die making the cause of the struggle pointless.
So how come that we are undefeated?
Well, through it all, and in spite of it all, we continued to be able to provide, each time, the next bottle of medication. From one bottle to another, walking as if on the water, we were never discouraged by the stormy winds. This time also we hope to be seized by the One toward whom we walk upon faith.
Please, support us whatever way you can. Among the obvious ways of support, please, maybe you know somebody influential enough even to challenge Polish Medical non(?)-humans.
Also, it would be great, if you could help us in the area of checking the information about new medical developments. Because Niemann-Pick disease touches kids even in USA, there are new ways and methods of fighting the disease.
Below you will find new details we found. If you have access to more information, please, let us know.
Thank you also for every penny, for ever whisper in prayer. These little things make Church, in the hands of its LORD, the most effective power in the universe.
As always, we love you, our great Family, soon to be met in Heavenly Places.
Yours, as ever –
(Humbly in Isaiah 19)
Information we’ve got:
1. Information from the company producing Cyclodrexin (another name of this medication is Trappsol) for Niemann-Pick C Syndrom.
2. Article about siblings, who are on this medications for 3 years now.
3. They are treated in this hospital. Their doctor’s name is Caroline Hastings.
4. In September 2011, European Agency of Medicine accepted this medication as for medicine for rare diseases and announced it as a treatment potentially able to treat NPC.
5. FDA (Food and Drugs Administration) did not accept yet the clinical tests. Nevertheless, as the parents of the sisters and their leading doctor claim, this medication is used also in Europe for treating this disease. In September 2011 already 11 patients where treated with this medicine.