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They want these children to have all the necessary medical care and therapies available without having to collect clogs or organize charity concerts, as is often the case.
"Rare diseases are, in most cases, serious and incurable diseases, and such small patients, along with their families, often suffer very severe suffering." celebrate the International Day of Rare Diseases, celebrated since 2008 every year on the last day of February Fundamentals of William Julian. The Foundation for the Help of Children with Rare Diseases was founded last year by the parents of a two-year-old boy Viljem Julijana, who has a very rare incurable disease.
Rare deseases
Cheers
William Julian: "Your son can not be greeted that you will have to say goodbye to him …"
William Julian has ganglioidosis, a rare autosomal recessive hereditary disease. In Slovenia, only 1 child is born with 100,000 to 300,000 births (ie every 15 or 20 years), and Viljem Julijan is the only one with whom in the last ten years.
So far, there are already nine children
In their first year of operation, parents are musicians Gregor in Nina with donations, has already helped nine children with rare diseases in the total value of 19,000 euros.
Finally, the aid was granted for 10 years TjaĊĦa, who has a very rare disease – Mowat Wilson syndrome. This is due to mutation in the ZEB2 gene. At age three and a half, she also suffered from cancer, which she was able to overcome with cancer, chemotherapy and radiotherapy. However, because of a rare disease, the girl has a great delay in development, so she does not walk or talk,
It is still important for the fund to inform the public, which very little about it. Patients are in the minority, the public is not (sufficiently) aware of them and therefore, they are not a priority in public health, and diseases are therefore poorly researched.and.
"We hope that in our society these children and their families will receive support, acceptance, compassion and understanding. Faced with their difficult situation, they would never have to find prejudices, exclusion, condemnation and stigmatization. We wanted to be the company that would take care of these special children for their best efforts, because they teach us that in the end, love and relationship are the most important things in life. Let's give small fighters our love and support, because their lives have the same invaluable value as each other's lives. " added Gregor and Nina on this year's World Rare Disease Day.
In February they carried out the Letters of heart, with which they invited the general public and kindergartens and schools to create messages from the heart to support children with rare diseases and their loved ones. People were encouraged to give their personal support, understanding, compassion and love, during the First World War, to rare little fighters.
Support means a lot
"All support in such anguish is great, while giving children with rare diseases recognition for the fight against disease and recognition of the inestimable value of their life and existence, regardless of their state of health. of social and health problems, often face including prejudice, non-acceptance, incomprehension, stigmatization and even discrimination " explained the president of the Viljem Julijan Society and the doctor Nejc Jelen.
He presented a plan
They also William Julian Action Plan with the initiative to improve the situation in the field of rare diseases in Slovenia. The plan will be sent to the Minister of Health, the Prime Minister, the President of the Republic, the President of the National Assembly, the members of the National Assembly and the advisers of the National Council. Accordingly, they want these children to have all the medical care and therapies available, without having to collect clogs or organize charity concerts, as is often the case.
A rare disease is a disease that affects five or fewer people per 10,000 inhabitants. Unfortunately, 95% of all rare diseases have no drug or treatment. There are between 6000 and 8000 rare diseases. According to estimates, 30 million people with rare diseases live in the European Union, while in Slovenia it is estimated at around 120,000, representing 6 to 8% of the population.
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