I would have never thought that within two years I would encounter two cases where parents were appealing for help to save their children suffering in SMA (Spinal Muscular Atrophy). In summer 2017, one of my former primary school classmates drew my attention to two twin girls who had this genetic disorder. At that time we, Hungarians living in Ireland could contribute to the cost of their medication with a significant amount. I keep following the facebook page of little Aliz and Zoé and it fills my heart with joy to see how they are improving. That is why I thought I would make an appeal again - this time for another beautiful little angel, Noémi.
Noémi is a six-year-old Hungarian girl and like Aliz and Zoé, she also has Spinal Muscular Atrophy. This condition means that due to a chromosome defect her body is incapable of converting protein into muscle. As a consequence, her limbs and her vital organs will fail. This will eventually lead to her death. The doctors predicted her to die around the age of 10 or 12. While rumour says that medication could be available to treat SMA within 10 years at a decent price, Noémi cannot wait so long. Currently, the only treatment available is in a form of injection. As the injection, Spinraza, is only available in the USA, due to patents Noémi’s treatment would cost about 215,000 €/244,000 USD/322,745 CAD per year. Noémi’s mother applied for support at the Hungarian Health Insurance Treasury, however for some reasons the named institution cannot finance Noémi’s treatment. As the parents are unable to afford to pay for the medication, they appealed to everyone who can help even with as small an amount as the price of a coffee to save their daughter's life.
You can find a video of Noémi and her mother made by the Hungarian affiliation of the TV channel, RTL Klub below. The short report is in Hungarian. In summary, the video starts with the reporter telling that Noémi suffers pain everyday now. Then Noémi explains that her mother has to bend and stretch her legs and arms every single day in order to mitigate her pain and in order to delay the deterioration of her muscles. Noémi’s feet are very weak now and she cannot walk at all. The mother devotes hours every day to help her. She tells that the greatest dream of her daughter is to walk and to dance on a stage.
The little girl’s family and friends created a charity organisation for Noémi. In case you would like to help, you can transfer money to the following account:
IBAN: HU77 1173 3027 2836 0616 0000 0000
You can find more information about the organisation and about charity events for Noémi on their facebook page.