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jessica santini Female Brooklyn, NY United States: Favorite

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Duchenne Smiles

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Exon Deletion 52

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going to cincinatti?

Started this discussion. Last reply by Shawn Mar 13, 2013. 17 Replies 0 Favorites

so my family and i are heading to cincinatti to see dr wong. any advice or any recomendation on a place to stay that is affordable Continue

Info on pushchairs

Started this discussion. Last reply by Laurie Paschal Aug 7, 2010. 3 Replies 0 Favorites

Hi so were in the process of getting franky a new stroller because the one he has is to small, i wanted to ask if anyone knows were would be the best place to get one, i have been looking online but…Continue

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About me:: My name is jessica im the mother af a wonderful four year old little boy and hes name is franky, and he ws diagnosed with duchenne on sep 14, im in a roller coaster of emotions im angry,sad,and numb at the same time makes no sense right im just trying to understand and absorbe all the information the doctors are trowing at me, without braking down cause im scared that if i let myself breakdown i dont think i can get back up and i need to stay strong for my son..

About my family:: Iam originally from puerto rico but i was raised in boston i lived there almost all my life until i met my husband and moved to new york he was born and raised here and we have been living in brooklyn new york for seven years..

Name(s) of child(ren)/individual(s) with Duchenne:: franklyn lopez

Age(s) of child(ren)/individual(s) with Duchenne:: 4-6

City:: brooklyn new york

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stair lifts help

Posted on March 2, 2014 at 6:46pm 2 Comments 0 Favorites

Hi everyone so were in the process of renovating our home and we are not sure to go with the wheelchair ramp or a wheelchair lift for the outside of the home we live In new york and my concerns with a lift is the weather it is very unpredictable and not sure what to do.. any suggestions would be greatly appreciated

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At 10:13pm on July 27, 2010, Perlita & Gordy Hains said…: We were dx 1 1/2 years ago - I say WE becauae it has affectd our entire family. It is the hardest thing EVER but we must remain steadfast for our sons. Facebook has great DMD support as well - look for Duchenne groups there too. We are all in this together & WE are the only one that GET IT!!!! xoxoxo perlita

At 9:53am on June 29, 2010, cheryl cliff said…: Hi Jessica,
Hope you find this site as I do, full of information and support. Don't hesitate to ask anything, anytime. More hugs!
cheryl