The long awaited message: Abris will receive his 7th injection in Hungary! We hope he continues to be approved so that he can keep getting treatment at home. We still continue our hard work with our foundation – it is really important that we are able to travel to Belgium and Italy to see our doctors and physiotherapists. Have a great weekend everyone!
They finished Abris’s corset, calibrated the stander plus we got to try the wheelchair too to make sure everything is as precise as it should be. The facility was amazing, the staff, the quality of care – 3 people were working on us from 9 in the morning till 6 in the afternoon. Everyone was really nice to Abris, who took the long day struggle like the champ he is. He is the strongest lil’ man. We have one last consultation meeting tomorrow morning with our physiotherapist and someone from the company that makes the medical aid tools and then we’re off to go home!
We arrived in Milan where Abris will receive his wheelchair, corset and stander. They haven’t finished all but we got to try one of them. After a long day of traveling, he stood his ground like a champ 😉
Tears of joy Its only been 7 months since the first Spinraza treatment…but even I couldn’t dare to hope to see Abris like this. After being told a year ago – by Hungarian doctors – that he only has a couple of months to live, this kid is pushing himself in a tiny wheelchair – even if just a little bit. This counts as a miracle to us. The irony is that one of these doctors was at the conference in Krakow today. I wish she saw in person what the child who she passed on is capable of now. I can only encourage […]
Second day Abril’s expression tells all… 😀 Some of the presentations go beyond my genetic knowledge, but we still are learning a lot. Thankfully, some members of SMA Hungary are bigger experts in the topic. Our Belgian neurologist and Italian physiotherapist are also here, so we have some familiar faces to see. Have a great weekend everyone!
Miracles can happen when two kids hearts are beating for the same cause. Letti wants to sing for Abris. A lot of people have come together to help Abris since his story started and they keep helping one way or another even to this day. Letti, this 11 year old girl decided she wants to help by singing her heart out. Letti gave up her christmas presents, thinking thats the way she would help Abris but didn’t know her parents had bought her gift before, tickets to see her favorite singer, Emeli Sande. When she found out, she asked if she could meet Sande, sing […]
Dear Everyone! I want to thank you all for all the support, love, positive energy and the unbelievable way you guys have come together for us in these past couple of months. I could not be more grateful for giving us the greatest gift, allowing Abris to be here with us, decorating the tree, spend time with his loved ones. We wish you a blessed and merry christmas and may the new year bring you health and happiness. Abris and Flora Photo credit: Johnny Izing Photography All rights reserved.
With the holidays approaching the staff and clients of Kiwisun Solarium reached out to donate to Abris’s cause. They were able to pull together HUF 61.000 for which we are deeply grateful! It is amazing that you are still here with us and help us along our way. Thank you to everyone!
Another wonderful news to start the week! Curtesy to DiBiem Casting another charity event came together. They recruited extras for a TV shoot this Saturday and all the actors donated their days’ pay to the BJÁbris Fund. Their contribution, together with the company’s own was 450.000 HUF. Huge thanks for everyone who was there, who helped put the event together or contributed in any way! You guys rock!
The “Make a candle for Abris” event that was put together by Zsuzsanna Negre and her friends this Saturday collected 130.000 HUF for Abris’s fund. HUGE thanks to all the organizers, participants and contributors – to everyone donated the time, help and love.