Join Nar's Army : Fight Hyper IgM
Donation protected
Nearly 2 years ago, our son, Nar bravely battled a life threatening infection and recieved a diagnosis that would change our lives forever: Hyper IgM Syndrome. This rare genetic condition effects just 2 per million boys and renders him defenseless against illness. When he left the hospital, his fight was far from over. Nar's immune system does not function properly. His internal army cannot fight invading germs. This places him in a very precarious position with an average life span of just 24 years old & a high risk for cancer & other dangerous infections. Nar currently takes preventative antibiotics, endures weekly infusions of antibodies, has frequent doctor vists & labwork to help protect him. We have made life style changes & take extra precautions to prevent Nar from getting sick. These measures however, are not enough. The only cure is a bone marrow transplant. We need to replace his malfunctioning immune system with a new army of healthy cells ready to fight off germs.
The safest, least risky option for Nar is to have a perfectly matched, related , bone marrow donor. The most likely source is a sibling (which he does not yet have).
Since Nar's diagnosis, we have learned as much as we can, sought the advice of many doctors, and weighed our options very carefully.
The time has come to start the process of bone marrow transplant for Nar. We are committed to doing everything in our power to give our son the gift of a long, healthy life. We are beginning the process of specialized genetic testing to add to our family and hopefully provide Nar with the perfet match & cure.
Throughout his short life of just 3.5 years, Nar's strength, bravery, resiliency and fiesty personality have been a true inspiration to us as parents. He is empathetic , compassionate, loving, silly, and oh-so sweet! Quite simply, he is our hero. Now, he needs his own hero.
So, why do we need your help? The journey ahead of us(getting the perfect match and transplant) will be long, difficult, and costly. When it is time for the transplant, we face living away from home, long term isolation to keep Nar safe, & possible reduced income. Some aspects of the transplant are covered by insurance while others are not.
Nar has given us the gift of true gratitude. He has taught us a new level of appreciation for how special each moment really is. As parents, we owe him the opportunity to live without the fear of the invisible enemies, lurking around every corner, ready to invade his body. We desperately want to give him the gift of health & wellness. We humbly ask for your help to cure our son. Thank you!
The safest, least risky option for Nar is to have a perfectly matched, related , bone marrow donor. The most likely source is a sibling (which he does not yet have).
Since Nar's diagnosis, we have learned as much as we can, sought the advice of many doctors, and weighed our options very carefully.
The time has come to start the process of bone marrow transplant for Nar. We are committed to doing everything in our power to give our son the gift of a long, healthy life. We are beginning the process of specialized genetic testing to add to our family and hopefully provide Nar with the perfet match & cure.
Throughout his short life of just 3.5 years, Nar's strength, bravery, resiliency and fiesty personality have been a true inspiration to us as parents. He is empathetic , compassionate, loving, silly, and oh-so sweet! Quite simply, he is our hero. Now, he needs his own hero.
So, why do we need your help? The journey ahead of us(getting the perfect match and transplant) will be long, difficult, and costly. When it is time for the transplant, we face living away from home, long term isolation to keep Nar safe, & possible reduced income. Some aspects of the transplant are covered by insurance while others are not.
Nar has given us the gift of true gratitude. He has taught us a new level of appreciation for how special each moment really is. As parents, we owe him the opportunity to live without the fear of the invisible enemies, lurking around every corner, ready to invade his body. We desperately want to give him the gift of health & wellness. We humbly ask for your help to cure our son. Thank you!
Organizer
Meaghan Scaia
Organizer
Middletown, CT
