Help Gage with medical expenses ❤️rare disease
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Hello my name is Susan Butler , i’m Gage’s mom !! As most of you know we have had a long crazy year of surgeries and doctor appointments. We finally have an official diagnosis for my boy , He has a rare genetic disorder called “Brugada Syndrome”. He was born with a genetic mutation of his SCN5A gene. Sadly there is no cure. Gage just had his third surgery on Monday. They removed his pacemaker and replaced it with an ICD
( implantable cardioverter defibrillator) device. He has an extremely high risk of sudden cardiac death . There’s no words to describe the emotional roller coaster we have been on . Gage is such an amazing young man who just turned 20 and has his whole life to live . The medical expenses just keep coming in and on top of his regular bills we are just unfortunately unable to keep up . I want to help Gage in any way I can, including financially, so all he has to worry about is getting better so that he can live his best life !! I also hope this brings awareness to this rare genetic disorder and can hopefully save someone’s life. We are still learning about Brugada Syndrome and if Gage wasn’t rare enough with his blue eyes and red hair(2% of the world) he had to have a rare genetic disorder too !! Me and his little sister Olivia will also have to get tested for it since it is an inherited mutated gene . It’s crazy how a seemingly healthy young man can be walking around with a life threatening disorder without knowing it. I am truly grateful for everyone God has strategically placed in our lives and I know God has great plans for Gage !! Hug your babies tight no matter how old they are !! I pray that God allows me to watch Gage grow old and that his defibrillator will do it’s job and keep my boy alive !! Thank you so much for the love and support.
Update: Gage’s surgery went very well!! We have our two week post-op checkup tomorrow!! Also we are still waiting on my test results to see If I have Burgada and Olivia , Gage’s little sister goes for her genetic test on 2/21/22 . Please keep those prayers coming !! Thank y’all so much for all your prayers and Love !!
( implantable cardioverter defibrillator) device. He has an extremely high risk of sudden cardiac death . There’s no words to describe the emotional roller coaster we have been on . Gage is such an amazing young man who just turned 20 and has his whole life to live . The medical expenses just keep coming in and on top of his regular bills we are just unfortunately unable to keep up . I want to help Gage in any way I can, including financially, so all he has to worry about is getting better so that he can live his best life !! I also hope this brings awareness to this rare genetic disorder and can hopefully save someone’s life. We are still learning about Brugada Syndrome and if Gage wasn’t rare enough with his blue eyes and red hair(2% of the world) he had to have a rare genetic disorder too !! Me and his little sister Olivia will also have to get tested for it since it is an inherited mutated gene . It’s crazy how a seemingly healthy young man can be walking around with a life threatening disorder without knowing it. I am truly grateful for everyone God has strategically placed in our lives and I know God has great plans for Gage !! Hug your babies tight no matter how old they are !! I pray that God allows me to watch Gage grow old and that his defibrillator will do it’s job and keep my boy alive !! Thank you so much for the love and support.
Update: Gage’s surgery went very well!! We have our two week post-op checkup tomorrow!! Also we are still waiting on my test results to see If I have Burgada and Olivia , Gage’s little sister goes for her genetic test on 2/21/22 . Please keep those prayers coming !! Thank y’all so much for all your prayers and Love !!
Organizer
Susan Butler
Organizer
Ashland, MS