Dopa Responsive Dystonia

[brokenheartx712]

I was fortunate enough to stumble across Harrison six months ago. He is the sweetest guy I've ever met, has such a great heart, and you would *never* guess he didn't learn to walk until he was eight. He has become my best friend, and if he didn't take medications on a daily basis, I never would've known anything was ever wrong. Harrison is the happiest young man I've had the luck to find, I rarely see him upset or even angry.

Miracles are possible, these two kids are prime examples of that.

[BostonGirl5560]

I actually have this condition. It was like a miracle pill with in two weeks all my symptoms went away. It started in the six grade and not medicated properly until I was 19. Before that they were just guessing. I was told I had a dopamine deficiency by a Parkinson's diseases specialist 17 years ago. I didn't care what the name was I was glad the medication worked. Now 36 I was told I have dopa responsive dystonia.

[ponyjoe13]

aww there so cute god bless them

[littleblondmonkey]

wow what amazing kids

[TugaPipeJunior]

It's incredible how medicine is getting so effective.

[flatspinach]

Do a Google search on "Ed Impala" and you're find an ABC news video about a man in WA state who was diagnosed after 30 years when his brother found this story on the drdcentral website.

[dashby2004]

@flatspinach

Hi my Name is Derek and I would be very pleased to get in contact with you. My dauther has just been diagnosed "DRD" or what is also been called "Segawa-Syndrome".

Would be nice to hear from you.

Regards from europe

[flatspinach]

@dashby2004 Hi Derek - Just post a message to the message board on the main drdcentral web site.

[dashby2004]

@flatspinach Hi, I tried to get access to the message board at drdcentral, but up to now the webmaster didn´t activate my account.

Is it possible to reach you by mail or on any other way?

Thanks for your help!

Regards

Derek

[bonello2100]

i have two doughters with the sane condition, would love to get in contact with you!!

[skysimba7699]

@bonello2100

hey bonnello,i am a paediatric neurologist and i have seen many parents who think their children have the same condition but its not.anyway the best way to find out is to test the child after a dose of a medication called L dopa,under medical supervisiona and too see the improvement.And teh genetic study would also be useful.Contact the nearest paediatric neurologist you have in town.

god bless.

Tajul

[bonello2100]

@skysimba7699 My daughters have the same condition.That's why i would love to get in contact with these people.

[flatspinach]

@bonello2100 Go to the drdcentral website and post a message to the message board to contact drd patients and their families.

[bonello2100]

@flatspinach thank's but the big problem is that i only know a few things about computer.i don't know english very well and i don't have any body to help me or to show me how.i know how to send emails most.tomorrow i try message to the message board.

[iamacoolkorean]

inspiring story

[L8drop88]

Hello, I have two younger brothers with very similar symptoms. One of them has been perscribed Sinement and has been taking it for years. It may help some but he is still held captive by the wheelchair and does not show any signs of progress. If anything it is getting worse as the years go by. The hardest thing i have ever dealt with is helping my brother into bed during a family vacation and he looked up at me with one tear in his eye and said "Why would god give me a body I cant use"

[bonello2100]

@L8drop88

[glenz1967]

hi, my name is adele i was born in 1970, watching this video was sureal it was like watching myself, older sister and younger brother all over again . we are in the medical history books as been the first family to be diagnosed with DRD, What i find hard to believe is we were found a treatment in 1975 so why is it that children are still taking such a long time to be diagnosed,msay i offer hope for your future we have 7 children between us now none have dystonia, i wonder if it is recessivegene

[wltracy]

Thanks for sharing this story. I have dystonia and have found relief myself. Sometimes the pain comes back a little, but I am way better than I used to be. It really makes you appreciate what you have.

[timothyj1966]

so HAPPY for the outcome in this.....the little boy is so grateful for his second chance....inspiring....

[Sydney2376]

I only wish I had known about this. I have been diagnosed with DRD since the 80s and was given Sinemet CR 50/200 back then. These symptons are exactly the ones I had. I could've saved this family alot of pain.

[EasyCardDesigner]

This is hope for many with children whom have similiar disabilities. Bless you and those children for sharing their miracle.

[buckyrox2008]

This made me cry.

[anna1969]

Also I am being treated with the drug Sinemet I am now myself a 100% and I have been fine for the last 8 months. I never want to go back to the way I was, I only wish medical treatment  like this had been available to me like the young children in this film.

[SuperLuigi224]

god bless those kids, their family, and the doctors that helped them. :)

[karatekid4evr]

i can't believe that i know this family and that it doesnt even seem like they even had that