2023-09-14 23:50:13
Luciano and Nina, in a photo from their social networks
The Uruguayan State appealed this week the Court’s decision that ruled in favor of the musician Luciano Superviellewho fights to guarantee her daughter access to a medication to treat the acondroplasia, which has a value of about US$10,000 per month.
The story of nine-year-old Nina could mark a milestone in Uruguay, as she could become the first person to receive the Voxzogo medicineessential to treat your achondroplasia.
What for the family represented a victory in favor of the minor’s rights, with the State condemned to provide her with the medication she desperately needs, later ended in disappointment and a new legal battle. The certainty that this will occur has not yet materialized, since the three institutions involved in the case, The Ministry of Public Health (MSP), the Social Security Bank (BPS) and the National Resources Fund (FNR) have appealed the ruling.
Nina and fights for her right to have access to health in a rule of law
Nina, at nine years old, has begun to notice that she is the shortest among her third grade classmates. Although this does not affect her neurological abilities or abilities, her environment treats her as if she were younger than she is. Luciano Supervielle has avoided treating her differently at home so as not to generate conflicts in her maturity. He has even admitted that, at times, he has treated her like he is bigger than her because of the challenges she has faced, especially after the loss of her mother, Heloise, in 2020 to cancer.
Adaptation has been key in Nina’s life. Both her home and her school have been adjusted so that she can function autonomously. This includes having a stool next to light switches and furniture lower than usual.
Luciano has been aware of the medication Voxzogodeveloped to treat bone elongation. After joining the Achondroplasia Association of Uruguay, he learned that this medication would be available in Uruguay. This treatment could allow Nina will gain between 10 and 12 centimeters in height, avoiding future surgeries.
It was when they turned to the National Resource Fund (FNR), through the National Center for Rare Diseases of the Social Security Bank (CRENADECER – BPS). The medical prescription reached the judicial orbit, but the MSP believed that the best thing was to appeal.
The legal appeal has created a race against time, as each week and month that passes is time wasted for Nina to have a better quality of life. Despite the legal difficulties, Luciano Supervielle remains optimistic and trusts that the treatment can be carried out in Uruguay.
Artists support Luciano and Nina, and ask that their rights be guaranteed
In the new stage of the legal battle that the State has decided to give to Nina and Luciano, some fellow musicians came out to demand that the minor’s rights be guaranteed.
«The Uruguayan Government must guarantee the medication of Nina Supervielle (9 years old). And may it serve as a precedent for other children with achondroplasia in Uruguay. The drug, very expensive, allows growth of an average of 1.5 cm in height per year,” Jorge Drexler, who is also a doctor, wrote on Twitter.
For his part, the singer of the band No Te Va Gustar (NTVG), Emiliano Brancciari, published in support of Nina: “We are with you.”
Luciano Supervielle: “I am a better person since my children were born”
“Beyond what I have been through, I have had an environment and a family network, an ability to be able to face this situation, to be able to move forward and even in pain to smile again,” Supervielle told the Spanish media Cadena 3. After the death of his couple, faced the challenge of taking care of the two minors.
“She was sick for about two years and in some way she prepared us and the children to let go, that was the biggest challenge, and then fill the void of the person who was not there. There I had to accept as a widowed father that my children’s education was not going to be the same as what their mother could give them, strengthen the bond and connect with them to the maximum between talks full of love and reality,” she recalled.
“When I interact with my children I don’t see an abnormal situation, I feel a lot of love because I realize and am aware that it can be something that mobilizes other people (…) One of the great gifts that my children have given me is gaining empathy and that has forced me to become aware of problems that exceed theirs,” he added.
He understands that “each life is unique and despite everything, I feel great gratitude for the environment and the support I have had, one of the best decisions was to share, not close myself off.”
“In my life, Down Syndrome was a challenge, but there is a point where it stops being a concern and I normalize it. These are things that take time and grief, we have to process them and then each person embraces them in their own way. “I feel like a happy person and I find beauty in the little things in life,” he concluded in the talk with the Spanish network.
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