Hope for little Ciro
Donation protected
Little Ciro is our 17-month-old nephew who was born in Guatemala with a rare and fatal genetic disorder called Canavan disease.
He is a beautiful baby boy who was doing well until he was six months old when his parents noticed that he began having difficulty holding up his head and started having issues with his sight. After a few months of going to many medical specialists, Juan and Natalia went to Argentina to get Ciro tested. Finally, in January 2022, they received the test results that Ciro had Canavan Disease. At this point Natalia was 8 months pregnant with her 2nd child, Bastian. Canavan is virtually unheard of in Central & South America. The severity of this illness came as a great shock to Juan and Natalia, to all of us really. Canavan Disease is a very rare genetic and neurodegenerative illness that causes the brain cells to change and no longer function. Life expectancy for Canavan victims is very short and marred by a host of deteriorating physical trauma.
Natalia, Juan, and family are not giving up! Through research and with the help of doctors, a miracle was happening: Ciro was accepted into a one-of-a-kind program where he could participate in a new Gene Therapy Trial. This trial will include a serious brain surgery and hopefully will help prevent his brain cells from this devastating damage.
Ciro will be coming to Dayton Children’s Hospital in Ohio for this treatment starting on June 21, 2022 and will return to Ohio for checkups every 3 months for the first year. The follow-ups will continue for the next 5 years, back and forth to Dayton, OH from Guatemala, where the family lives, or Argentina where parents and extended family are from.
Ciro is a happy boy and keeps smiling and fighting to get stronger day by day - he is teaching us To Not Give Up! Thanks to the Dayton Children’s Hospital Gene Therapy, we have found hope, but Natalia and Juan will need resources to cover a lot of expenses for the next 5 years.
We are so grateful for any financial help you can give to make this treatment possible. It is the one ray of hope we have to stop the progress of this heartbreaking and fatal disease, not only for Ciro, but for others as well who will have the benefits of what is learned through the Gene Therapy trial.
Please, help us by donating generously and sharing Ciro’s story and our request with others.
Thank you.
Juan Lovato
Natalia Lovato
Cecilia Ribetto
Ana Seez
Carl Kurz
Catriel Kurz-Ribetto
Organizer
Cecilia Ribetto
Organizer
Boston, MA
