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Help Superhero Brandon fight adrenoleukodystrophy
$9,055 raised
105 contributors
2 Years running
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In June 2014 Brandon was a happy, sociable 7 year old boy who loves superheros and played sports. Over the summer he received a devastating diagnosis- x linked adrenoleukodystrophy. This is a rare, genetic disease, it affects boys with an age of ... More ...

Written by Valerie Henigson. In June 2014 Brandon was a happy, sociable 7 year old boy who loves superheros and played sports. Over the summer he received a devastating diagnosis- x linked adrenoleukodystrophy. This is a rare, genetic disease, it affects boys with an age of onset around 4-10 years of age. Prior to onset development is completely normal and screening has not been done routinely, that is just changing currently.

    X linked adrenoleukodystrophy is a serious, progressive disorder that affects the adrenal glands. Initial symptoms, which Brandon is already suffering, include; problems with learning, attention, behavior, vision, hearing, speech, balance and gait difficulties. Symptoms are rapidly progressive and can lead to severe disability, and a vegetative state. This is the condition portrayed so movingly in the film "Lorenzo's Oil".

     Brandon loves all superheros but he is Ironman's number one fan. Prior to these symptoms Brandon played soccer, baseball, basketball and swam. Now he has a 1:1 aide at school and private gym and recess to prevent injury. Things are going to get harder for Brandon and he needs our help to cope and get the best equipment and treatment for this disease, so he can remain comfortable and keep his superpowers as long as possible.

    Brandon's family needs financial support; there are medical expenses, prescriptions,travel expenses (the best treatment centers are in Maryland (Kennedy Krieger), and Minnesota).  Brandon will need specialized equipment and his parents will lose time from work in their efforts to care for him and to secure the best possible medical advice.

     Brandon lives with his parents, Paul and Liliana and his 4 year-old brother, Brian. loves all superheros but especially Tony Stark, Ironman. We know Brandon would use his powers for good- he says when he grows up he wants to design videogames that are easier for little kids to play.

    Paul, Brandon's father, has a supportive second family at his job at Port Chester Middle School. He is truly the person who is there for everyone and loved by everyone. Knowing Paul for many years I know he will be moved more by the amount of people who care enough to contribute than by the dollar amount    collected, so please give whatever you can, no matter how small. 

   If you are like me, you find it unbearable to feel helpless in the face of  this devastating tragedy. So let's give what we can to enrich and make comfortable the lives of Brandon and his family while we can. Let's help Brandon adapt and hold onto his superpowers as long as possible. Thank you. As I am writing this, I got a text from Paul; Brandon was just rushed to the hospital via helicopter. Please help as soon as possible. Thank you again.

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