Marc's campaign for United Pompe Foundation
Hello Friends and Family,
I am participating in my first Spartan race on April 13, 2019 at a place I hold dear to my heart, Citifield! I decided to do a fundraiser to donate to a cause that is EXTREMELY dear to my heart. My beautiful, intelligent , kind and extraordinary daughter, Victoria, has a rare disorder called Pompe Disease. It is unheard of by many and is also known as Glycogen Storage Disease. Victoria has the late onset version of the disease and was diagnosed in 2015 after a year of tirelessly going to every doctor and specialist in NYC. My wife and I thank God for Columbia Hospital and Duke Medical for their relentless help and support. The enzymes responsible for discarding glycogen from her body are missing and therefore the buildup causes muscle weakness, heart and lung complications, it can be debilitating. Infantile Pompe is fatal , we are fortunate in her case to have late onset. Victoria undergoes IV infusions of the missing GAA enzyme every 2 weeks administered by a visiting Nurse (thank God for Lola). It's an uncomfortable and sometimes painful process that lasts 4-5 hours each infusion. The disease also affects her hips, upper body and foot development. She goes through intense physical therapy and special orthdotics must be worn. I have never met a more stronger person in my life than her. Not once does she ever complain about ANY single stage of this extreme challenge in her life. She gets her strong will from my wife Carolyn and the unbelievable love and support of our family and friends. Pompe disease is incurable as of now. On our life changing visit to Duke, my wife and I have high hopes of new treatments that are underway and can be less intrusive even perhaps mimic the missing GAA genes through stem cell. We pray for their development. The other life changing moment at Duke , which is the world leader for Pompe treatment and research, are the other families coping with this. The infants and young children suffering through the disease was heartbreaking and unbearable to see. Cases even more severe than Victoria. We broke down in tears immediately. Some of these families and many others are struggling not only mentally but most importantly, financially. The costs are staggering for treatments and insurance doesn't cover all these expenses, some are not covered at all! The United Pompe Foundation directly sends financial aid to these families and their children. I am dedicating my race to Victoria and all the children affected. Please help me to destroy the goal of $10k and send immediate help to the less fortunate families struggling. God bless each and everyone of you and thank you in advance for your generous help.
Sincerely,
Marc Bianchi
I am participating in my first Spartan race on April 13, 2019 at a place I hold dear to my heart, Citifield! I decided to do a fundraiser to donate to a cause that is EXTREMELY dear to my heart. My beautiful, intelligent , kind and extraordinary daughter, Victoria, has a rare disorder called Pompe Disease. It is unheard of by many and is also known as Glycogen Storage Disease. Victoria has the late onset version of the disease and was diagnosed in 2015 after a year of tirelessly going to every doctor and specialist in NYC. My wife and I thank God for Columbia Hospital and Duke Medical for their relentless help and support. The enzymes responsible for discarding glycogen from her body are missing and therefore the buildup causes muscle weakness, heart and lung complications, it can be debilitating. Infantile Pompe is fatal , we are fortunate in her case to have late onset. Victoria undergoes IV infusions of the missing GAA enzyme every 2 weeks administered by a visiting Nurse (thank God for Lola). It's an uncomfortable and sometimes painful process that lasts 4-5 hours each infusion. The disease also affects her hips, upper body and foot development. She goes through intense physical therapy and special orthdotics must be worn. I have never met a more stronger person in my life than her. Not once does she ever complain about ANY single stage of this extreme challenge in her life. She gets her strong will from my wife Carolyn and the unbelievable love and support of our family and friends. Pompe disease is incurable as of now. On our life changing visit to Duke, my wife and I have high hopes of new treatments that are underway and can be less intrusive even perhaps mimic the missing GAA genes through stem cell. We pray for their development. The other life changing moment at Duke , which is the world leader for Pompe treatment and research, are the other families coping with this. The infants and young children suffering through the disease was heartbreaking and unbearable to see. Cases even more severe than Victoria. We broke down in tears immediately. Some of these families and many others are struggling not only mentally but most importantly, financially. The costs are staggering for treatments and insurance doesn't cover all these expenses, some are not covered at all! The United Pompe Foundation directly sends financial aid to these families and their children. I am dedicating my race to Victoria and all the children affected. Please help me to destroy the goal of $10k and send immediate help to the less fortunate families struggling. God bless each and everyone of you and thank you in advance for your generous help.
Sincerely,
Marc Bianchi
Organizer
Marc Bianchi
Organizer
Staten Island, NY
United Pompe Foundation
Beneficiary