Hope is our great fortress. It protects, sustains and allows us to live...
In the darkness, it is our lighthouse, the star that lights the way...
My name is Ramunė. I am the founder this foundation. A mother who founded it for her daughter, who came into this world with a companion, the severe, rare genetic disease cystic fibrosis (CF).
It is an extremely rare, insidious and slowly progressive, lifelong disease that results in early onset of disability, reduced quality of life and a significantly shorter life expectancy the later treatment is given. Disease-causing mutations target cells that produce secretions and any organ system can be affected, but the digestive and respiratory systems are most often and most severely affected. The disease is insidious in that many genetic and non-genetic factors influence the various symptoms of the disease, the time of their appearance and their degree of severity.
Unfortunately, we cannot choose everything in this world. We, humans, are constantly fighting for something. But the struggle of life for CF sufferers is one big ordeal of evil, a daily pursuit of hope and the sure victory of success.
For 16 years, my daughter Arėja’s life path has been accompanied by a severe mixed form of cystic fibrosis with two mutations affecting both the lungs and the digestive system. The difficult journey of the family, relatives and doctors continues as well, in order to ensure and maintain the best possible health and quality of life for the ill girl. As long as the state and various commissions are not interested in making the necessary decisions for treatment and help, we are forced to take care of treatment ourselves, which is also a huge financial burden. It takes a lot to continue the journey of my daughter’s life: medication is needed for the rest of her life, and one month of treatment costs almost 17 thousand euros. This is about 200 thousand per year, so that we could continue the started extremely expensive treatment with innovative drugs, CFTR modulators KAFTRIO and KALYDECO. It’s hard to put into words how hard-to-reach for us and inaccessible to everyone else drugs can turn into a feeling of helplessness.
Due to the critical deterioration of the condition and no state support, we initiated our daughter’s expensive treatment with CFTR modulators ourselves last year before Easter, although the start of the treatment was delayed. However, we could not wait any longer due to the rapidly deteriorating lung condition. We have already spent 160 thousand euros for this treatment and this is far from the end… We can no longer do it alone due to exhausted possibilities, but to stop the highly effective treatment that has started now would be extremely dangerous, because according to the data of various clinical studies, the termination is associated with a very threatening deterioration of the health condition and a very high risk to life.
Medicines that can influence the disease mechanism and completely change the health and prognosis of these patients are also available in many European countries, where the life dreams of CF sufferers come true thanks to such treatment. The innovative treatment of cystic fibrosis is equated with a revolution in the treatment of this disease. It has already been proven that these are drugs that can significantly improve the quality of life of patients and increase the life expectancy. They reduce the symptoms of the disease relatively quickly, improve and preserve respiratory function and body mass index, avoid hospital treatment and, finally, organ transplantation. When in Europe and America this treatment is already approved for children from the age of two, our state is still deciding, and cystic fibrosis patients in Lithuania have been “fed” only with promises for the third year, suffer, but do not receive state support for funding innovative treatment.
We want to believe that the right decisions will one day be made and the patients will be heard, although neither the requests of the most difficult patients, nor scientific evidence, nor heaps of writings and various initiatives have yielded results. There are about 90 such patients in Lithuania; if treatment is started in time, these drugs can extend life expectancy up to 50 years.
It is said that kindness cannot be touched, but it can be felt or given to others. The experiences of each of us, more or less instructive life stories, lessons learned and the path taken are our experience. Some are beautiful and happy, others are painful and more difficult. But basically life is for us to live! I dare to apply and, if you have the opportunity, I would very much like to contribute to Arėja’s hopeful life journey, to the opportunity to discover the key to a fulfilling and quality life. Any help and support from YOU or sharing this request with others is a light for us in this dark element. Because only thanks to the help, generosity and big hearts of all people, my daughter can live easier.
Companies that contributed to the support
CHARITY AND SUPPORT FUND “MANO VILTIS” (MY HOPE), LITHUANIA
COMPANY CODE 306456490
SWEDBANK
A/C LT677300010181275845
[email protected]
+370 682 03242
