- K
Hi I am Angelica,
My eldest Son Troy (15 years old) was diagnosed with Friedreich's Ataxia (FA) on his 12th Birthday and has deteriorated quite rapidly since his diagnoses.
Friedreich's ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system, he also has scoliosis, hypertrophic cardiomyopathy which is part of the FA and he also has epilpsy which is not part of the FA.
Troy uses a Mobility scooter at school and a walking frame at home as well as a wheelchair when he has no energy and for a 15 year old teenager this is not something an average boy his age would ever want to go through.
We live in Perth and unfortunately there are limited specialists here and we need to go to Melbourne at least once a year and he will be going again in September where he will be doing intense rehabilitation for 6 weeks where Troy and myself will be away from home and his Dad, Sister and Brother. He will also be attending studies which all go towards finding a cure for FA.
We would really appreciate any donations you can make towards our trip to Melbourne which will assist Troy majorly for travel and accomodation expenses for his next two trips.
**update 26th August**
Today I found out that the application for travel assistance was rejected by Troy's Neurologist.
I had heard this Dr rejected these applications often for the other families living here in Perth who wanted to go see the FA specialists in Melbourne and I'm not even sure why I figured My family would be any different.
I'm sad, angry but mostly just disappointed. Troy really needs this Physio for parts of his body that he needs to keep working for as long as he can, like his hands so he can pick up a cup or fork and his legs to keep him mobile for a bit longer. Yes, he can have Physio in Perth but there are no FA Physio specialists here so this is why we are going to go to Melbourne as they're located there.
Thanks again to everyone who has helped raise funds so far and also thanks for sharing his page we really appreciate this.
It's not too late to donate. ❤️❤️
Thanks
Angelica
My eldest Son Troy (15 years old) was diagnosed with Friedreich's Ataxia (FA) on his 12th Birthday and has deteriorated quite rapidly since his diagnoses.
Friedreich's ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system, he also has scoliosis, hypertrophic cardiomyopathy which is part of the FA and he also has epilpsy which is not part of the FA.
Troy uses a Mobility scooter at school and a walking frame at home as well as a wheelchair when he has no energy and for a 15 year old teenager this is not something an average boy his age would ever want to go through.
We live in Perth and unfortunately there are limited specialists here and we need to go to Melbourne at least once a year and he will be going again in September where he will be doing intense rehabilitation for 6 weeks where Troy and myself will be away from home and his Dad, Sister and Brother. He will also be attending studies which all go towards finding a cure for FA.
We would really appreciate any donations you can make towards our trip to Melbourne which will assist Troy majorly for travel and accomodation expenses for his next two trips.
**update 26th August**
Today I found out that the application for travel assistance was rejected by Troy's Neurologist.
I had heard this Dr rejected these applications often for the other families living here in Perth who wanted to go see the FA specialists in Melbourne and I'm not even sure why I figured My family would be any different.
I'm sad, angry but mostly just disappointed. Troy really needs this Physio for parts of his body that he needs to keep working for as long as he can, like his hands so he can pick up a cup or fork and his legs to keep him mobile for a bit longer. Yes, he can have Physio in Perth but there are no FA Physio specialists here so this is why we are going to go to Melbourne as they're located there.
Thanks again to everyone who has helped raise funds so far and also thanks for sharing his page we really appreciate this.
It's not too late to donate. ❤️❤️
Thanks
Angelica