Wow this was so powerful you are so right about it being a invisible disease and no one would know it cause your child looks fine and its challenging recently for me cause I feel like the doctors are nice but it's not their fault that they don't specializes in this but for the ones that tried challenging you and just not running some test and then blamed on insurance I feel like and I did glive them plenty reasons for these test and honestly whatever happened to doctors trusting the mother gut and they usually end up right! If I could ask for anything it would be this support, family, trust and knowledge!
How do we become part of your organization my son has severe congenital neutropenia we found out when he was 3 months old he's now turning 13 this August
Remo Valenti hi Remo so sorry to hear this I wouldn’t wish this on anyone but thank God the use of Medication through injections can now help tremendously it’s going to be extremely tuff since it’s extremely rare and unless things have changed there are only 6 doctors in the world whom truly research and study this disease if you need any help or have any questions feel free to contact me I can share everything we have been through, what to look for, what to watch out for, signs of when they are becoming weak, what to eat, and tips to handle daily life
We apologize for not seeing your message. If you are still interested, you can visit our website: neutropenianet.org/. There you can sign up for our newsletter to receive information. Best of luck to you.
Wow this was so powerful you are so right about it being a invisible disease and no one would know it cause your child looks fine and its challenging recently for me cause I feel like the doctors are nice but it's not their fault that they don't specializes in this but for the ones that tried challenging you and just not running some test and then blamed on insurance I feel like and I did glive them plenty reasons for these test and honestly whatever happened to doctors trusting the mother gut and they usually end up right! If I could ask for anything it would be this support, family, trust and knowledge!
beautiful momm
How do we become part of your organization my son has severe congenital neutropenia we found out when he was 3 months old he's now turning 13 this August
Hi, my son recently was diagnosed with SCN. He is 5 months old. How can we get real information to know how to deal with this. Thanks!
Remo Valenti hi Remo so sorry to hear this I wouldn’t wish this on anyone but thank God the use of Medication through injections can now help tremendously it’s going to be extremely tuff since it’s extremely rare and unless things have changed there are only 6 doctors in the world whom truly research and study this disease if you need any help or have any questions feel free to contact me I can share everything we have been through, what to look for, what to watch out for, signs of when they are becoming weak, what to eat, and tips to handle daily life
We apologize for not seeing your message. If you are still interested, you can visit our website: neutropenianet.org/. There you can sign up for our newsletter to receive information. Best of luck to you.