Stefi is a little boy with the face of an angel, born on February 24, 2015. He is non-verbal, can only move with assistance, and continuously needs a companion for any type of activity.
He is the first child diagnosed with a mutation on the mitochondrial gene MT-ATP6. m.8993T>G in Romania.
His story has two stages:
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The first five years until the diagnosis was made
Years of tests and medical investigations. Therapies in centers across the country and in Bucharest. Home therapies. Certificate of severe disability issued at 2 years, 4 years, and from 6 years extended until 18. Pneumonia and loss of skills.
After the diagnosis and the pandemic period
Sars-Cov-2 and staying at home. Leigh syndrome and mitochondrial diseases. Restarting therapies. Other types of tests. Another pneumonia. Click the button below to read more about all these.
ABOUT THE ASSOCIATION “PRIETENII LUI ȘTEFI”
Because Stefi permanently needs therapies, tests, and medical investigations, we established in May 2018, the Association “Friends of Stefi” (“Prietenii lui Ștefi”).
“The Association “Friends of Stefi” is a non-governmental, non-profit organization and aims to help in any way the recovery of our son, Ștefan Tudor Baciu.
We are part of the Association of Children with Mitochondrial Diseases, founded by Krisztina Ferencz, in Tîrgu Mureș in February 2019, which has 20 families with children diagnosed with various mitochondrial diseases residing in Romania,” say Anca and Constantin, Stefi’s parents.
We are registered in the Register of entities/units of worship starting from 09.05.2019. (https://www.anaf.ro/RegistrulEntitatilorUnitatilorCult/ tax identification code: 39436243) Stand with us and be among Stefi’s friends, together we can help him be a victor!
