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Little Elias Stylianos has a rare condition that became known for the first time last year through the effort achieved for Panagiotis-Raphael. It is important to know that a child suffering from this disease without medication lives up to 2 years.
His father’s post.
Today, Thursday, July 9, 202, little Elias Stylianos received his parental treatment, after a huge battle. On Monday, June 8, the young fighter struggling with spinal muscular atrophy started at Rio Hospital, where he remained for a long time, and arrived at the Agia Sophia Children’s Hospital to receive special gene therapy.
The child suffers from a rare, degenerative disease that affects the entire human musculoskeletal system, including the ability to swallow and breathe. Although the treatment was delayed, he eventually received it and from now on can hope that everything will go well.
The post of his father, Sotiris Savvas.
“We did it! Elias-Stylianos today, Thursday 9-7-2020 and during the morning hours received the gene therapy on Greek soil. Our joy is indescribable! Thank you very much to all of you who have been and are by our side and those who worked hard to make this miracle happen! ”He wrote.
As the Director of the Children’s ICU Andreas Iliadis, who closely followed the child while he was at the Children’s ICU of Rio, told a local newspaper thebest.gr, the child is the first child in Greece to receive gene therapy within the borders of our country and not abroad. .
A long road….
Elias-Stylianos is the second child of the family of Sotiris Savvas from Astakos. In the first month of life he developed spinal muscular atrophy. He has been battling the disease ever since, undergoing conservative treatment and undergoing tracheostomy.
His parents, two young people, have fought their own battle. They were promised that little Elias would be included in a list of people who would be treated for an attempt to be admitted to Greece for this rare genetic disease, which is currently only used in the United States.
Throughout the previous period, the parents of little Elias – Stylianos, have given many battles with time and bureaucracy, in order to come to our country and approve the specialized treatment of their son. They have been getting support from their FB followers, click HERE
A video recently showing his birthday, surrounded by health care workers stated:- “On this day our little man entered the world….Today, you are one year old and you have already achieved so much, a lot… We love you very much and we are here for you what ever happens! Happy Birthday our little angel”.
Zakynthos Informer wishes the family all the very best. A young boy who certainly has fought against all the odds at a very young age. Courage and strength be with you Elias Stylianos <3
Source anf full story in Greek:- https://www.thebest.gr
