I am so sorry -- my twins have Niemann Pick Type C and it's progressive like this disease. Join the Global Genes Project team to we can team up and all have a voice.
Hey.. My name i Kyle. I Live in the ACT Canberra. I Have axonal Neuropathy!. Not (GAN) this breaks my heart to see this.. im 22 years of age and going strong. Nothing brings me down. Call me if you have any breakthroughs! i would love to help the research. 0432373495
Quit arguing and support Hannah!! I also have Neuropathy. It is a terrible Disease and one that many people have not even heard of. Yes prayer is ok, but it will do nothing unless you have support. Support Hannah!! we all need a cure!!!
when i heard this story i statted to cry i would not imagine what i would do if this was my child i am going to try to get money to u guys and good luck
Prayers? Prayer doesn't work and most often does nothing but cause false hopes for the patient! Am I just a jerk for saying this? maybe but I'm a person with bilateral neuropathy in both feet and PRAYER DID NOTHING FOR ME BUT CAUSE ME ANGER! I'm sorry but that's how I feel! Google Mayo clinic and does intersecery(sp)prayer help in healing! Science helps : ) but prayer doesn't!
PS My thoughts are most certainly with this family and we do need money in this area!
First of all, your post is out of line... Second, If you are referring to my prayers "healing" Hannah, there is no need to infer that I was offering false hope for the family and of course little Hannah. As a mother of a child with a disability, I understand the comfort in knowing that there are others out there that can offer consolation in a way that no one else can. My thoughts and prayers are to give the family the strength they need to move forward.
Maybe you shouldn't assume they want yours or anyone elses prayers! If there was a God it would be different but there is absolutely NO evidence of there being one! If it were my child that I had on the net and someone said what you did I would be offended! I believe that many people are but are too polite to say so! Is my post out of line? maybe but I don't regret expressing myself as long as I have the freedom! Good day to you.
This is not a random comment to a random family... I know this family. Do you? How do you know that they don't believe that prayers can help them? Mind your own business and take your comments to someone who cares. I would be willing to bet that your comments are much more offensive than an offer from me for support... whether that support is in the form of thoughts and prayers, is no business of yours.
Good luck to wee Hannah, what a cutie she is....
bzylizzy 4 months ago
Please vote for Hannah!
Peace & Love,
Tim & Kate
chessdude67 1 year ago
I am so sorry -- my twins have Niemann Pick Type C and it's progressive like this disease. Join the Global Genes Project team to we can team up and all have a voice.
AddiCassiFund 1 year ago
We are praying that the Pepsi Refresh Funding will go to Hannah's Hope! We have rallied people on Twitter and Facebook and thru our emails.
God Bless You!
JBELLE127 1 year ago
Hey.. My name i Kyle. I Live in the ACT Canberra. I Have axonal Neuropathy!. Not (GAN) this breaks my heart to see this.. im 22 years of age and going strong. Nothing brings me down. Call me if you have any breakthroughs! i would love to help the research. 0432373495
gundeb 1 year ago
my mom knows you guys. my school told me they would fun raise and help you guys
Scremo3mo 2 years ago
Quit arguing and support Hannah!! I also have Neuropathy. It is a terrible Disease and one that many people have not even heard of. Yes prayer is ok, but it will do nothing unless you have support. Support Hannah!! we all need a cure!!!
mckeehanrenee 2 years ago
lowering carbs helped me- it's almost gone~
helensmoot 2 years ago
when i heard this story i statted to cry i would not imagine what i would do if this was my child i am going to try to get money to u guys and good luck
daisy1041 3 years ago
Thank you for sharing your story. You are an inspiration and our thoughts and prayers are with you and your family.
thefavilles 3 years ago
Prayers? Prayer doesn't work and most often does nothing but cause false hopes for the patient! Am I just a jerk for saying this? maybe but I'm a person with bilateral neuropathy in both feet and PRAYER DID NOTHING FOR ME BUT CAUSE ME ANGER! I'm sorry but that's how I feel! Google Mayo clinic and does intersecery(sp)prayer help in healing! Science helps : ) but prayer doesn't!
PS My thoughts are most certainly with this family and we do need money in this area!
99minerkc 2 years ago
First of all, your post is out of line... Second, If you are referring to my prayers "healing" Hannah, there is no need to infer that I was offering false hope for the family and of course little Hannah. As a mother of a child with a disability, I understand the comfort in knowing that there are others out there that can offer consolation in a way that no one else can. My thoughts and prayers are to give the family the strength they need to move forward.
thefavilles 2 years ago
Maybe you shouldn't assume they want yours or anyone elses prayers! If there was a God it would be different but there is absolutely NO evidence of there being one! If it were my child that I had on the net and someone said what you did I would be offended! I believe that many people are but are too polite to say so! Is my post out of line? maybe but I don't regret expressing myself as long as I have the freedom! Good day to you.
99minerkc 2 years ago
This is not a random comment to a random family... I know this family. Do you? How do you know that they don't believe that prayers can help them? Mind your own business and take your comments to someone who cares. I would be willing to bet that your comments are much more offensive than an offer from me for support... whether that support is in the form of thoughts and prayers, is no business of yours.
thefavilles 2 years ago
Freedom of speech baby freedom of speech!
99minerkc 2 years ago