Cole's Crew - Great Steps for Neurofibromatosis

[cynthia35694]

may god bless you, my son is 17 and he's has it too, i just pray for him and ask god to keep him under his wings and you too be blessed

[joe12995ify]

cole its joe accordino ur famoous your on youtube this song makes me cry :'(

[becsmcco]

Best of luck, i have it too

[kirstyrand1]

i have nf too good luck in the walk i hope u rasie loads of money i rasied £2000 doing a swim. my love gose out to you i know how hard every can be. :~) i am 15 and i was dianogsed at 5 my mum had it and sadly died of it.

[xxscoliosisgirlxx]

i have Nf1 and Nf2 it dosnt bother me only wen kids decide to take the mick and bully me but i just try and let it not get me

[SweetBrwnSuga]

@xxscoliosisgirlxx you are so strong.

[BLINDMASTER121]

@xxscoliosisgirlxx hope you will get better love xxx

[expreske]

good luck to you and your family,

have nf1 myself, not easy to live with...

but life is so beautifull, make (just like me) the best of it ...

greetz frm belgium

[xadvancez]

@expreske Mooie woorden :)

[hawker445]

im have NF1 :( i was dignosed when i was born,

[tke879]

hi cole i have Nf two.and good luck

[eyeluvmyfamily79]

My family are with you Cole. I was diagnosed when i was 6 days old. My wife and i hace a 1 years old whom also got diagnosed with NF1.  Just believe in yourself and keep faith that you are strong!!!

[jordavfc2k8]

i hav this it doesnt affect me as of yet... im heakty play football but still got the coffee marks..15 female

[hawker445]

where do you have those spots? i have it mostly on my back and right leg

[devonballancelover4]

hi cole i wish you the best of luck and hope everything goes good and you have a happy and healthy future

[engel8831]

It is hard even for me there is no support for Israeli government

Or help, for me it has a growth Mnigiumh Bmh ..

The stains have. Last visit with the doctor, afraid ברפלקסים problem .. what would be?

[whooseyerdaddy]

i live in the uk and also have nf1, constant pain and head aches, always tired and have sleep problems, im dislexic have a big tumor on my right arm that they wont operate on with all this i get no help from the government or benefits. is anyone else in the same possition and cant get the help they need, if anyone has a solution in getting support please contact me.

[TheHarrypotter44]

hi my name is david i have nf1 and i am stating to get some tumors on my back

i think you can try and clam for dla as that is what i am clain at the moment

i whis that some one could help us lot with nf1 as they do not kw what we are going thow

you need an more info just contae me

if

[peteboy1113]

cole the best of luck, i left a comment on reggies utube site he has -nf- also.look if they ever say we can do a gene transplant on you to cure you and others -please call me first. who would miss me. i am 52 single and have lived a mostly normal life. but just to give you and others with nf - a chance i am all for it. they can pick me clean gene wise, if it helps cure you and others lets go for it. good luck i am in your connor.

[inDoKid101]

i support u even i have neurofibmatosis

[RachelMLinn]

i have not had to have surgery yet

[jrutter7]

Cole had surgery at the end of May and is doing good. He was able to attend the NF walk in Naperville in June(although he rode in a wheelchair during the walk). At the end of July we spent a week at Boston Mass General hospital and now we are just looking forward to school starting.

[BLINDMASTER121]

@jrutter7 good luck in the future young man cos you are truely remarkable young man gretting from a very sunny northern ireland

[RachelMLinn]

i have this disease as well. I was diganosed when I was an infant. I used to have severe pain when i was younger but than it stopped. it started up again recently and I went to the ER to learn that I have bone deformitys that may need surgery. It is queit painful at times.

[Nightingifts]

My grandfather never had his NF diagnosed in his lifetime. They told him it was because his mother's tea was too hot during pregnancy.

I found out what all my lumps and bumps and headaches and itches were when I was 35. They said I was just allergic to everything.

My niece was diagnosed at 2 years old.

That is almost 100 years of slow painfully progress in NF research.

Well done Cole! If you can let people know about this, that's progress.

[KC0TCH]

i was 3 when i was diagnosed with NF

[KC0TCH]

to me seeing him was like looking at myself as a child

[KC0TCH]

i also have scoliosis , ive had the painfull headaches ( 12 on a 1-10 pain rating), learning didabilities, and had to endure the taunts and teasing by my peers in school.

[KC0TCH]

i can totally relate to this, i also have nerofibromatosis i know about the cafe-aulet spote and the bumps on the skin