Nicole France
  • Female
  • El Dorado Hills, CA
  • United States
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Nicole France's Discussions

Newly Diagnosed at Age 12 and needing information on mobility and transportation funding/resources

Started Jan 8, 2013 0 Replies

My son received a late diagnoses, he is 12 almost 13. It will not be long before he will require a wheelchair. This also brings with it the concern for transporting my son, his wheelchair and the…Continue

Tags: funding, transportation, mobility

 

Nicole France's Page

Profile Information

About me:
I'm a woman that wears many hats. First and foremost I am a mom to 5 amazing kids. We recently found out my 12 year old has Duchenne Muscular Dystrophy and my world has been turned upside down, however I will do everything in my power to fight for my son. This all comes at a time where I am having to face leaving a toxic relationshipf anyone can do it...it is me; my children motivate me to be all that I was destined to be and more.
Name(s) of child(ren)/individual(s) with Duchenne:
Riley
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
El Dorado Hills
State:
CA

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Nicole France's Blog

Letting Go and Letting Be

Posted on January 29, 2013 at 1:08pm 0 Comments

Riley just returned from his church group's winter camp. They got in 8 hours later then they had anticipated but we didn't mind as it was more time Riley got to spend being a normal 12 year old boy. He shared with us pictures and videos of his weekend adventure and my heart about stopped when I saw him racing down a snow covered hill in an inner-tube. I personally want to put all my kids in a bubble so they never suffer a single injury after my 7 year old suffered both a broken leg and elbow…

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We Will Not Be Defeated

Posted on January 10, 2013 at 9:04pm 2 Comments

I have not traveled the easiest road to say the least; I have found myself penniless, destitute, hurt, and lonely. I have been lied to, cheated on, and belittled. My ability to trust and rely on others has been shaken. These roads sucked and I would not wish my worst enemy to travel a single one. But I have quickly learned these roads do not compare the the road I must now face. I am faced with the possibility I will lose my son to a fatal disease that slowly robs him of ability to…

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The Day My World Was Turned Upside Down

Posted on January 7, 2013 at 12:36pm 2 Comments

I was so full of hope for 2013 after what had been the worst year ever. Until Friday, January 4th when I heard something that would forever change our lives; my 12 year old son had been diagnosed with Duchenne Muscular Dystrophy. When I heard the neurologist give the diagnosis I vaguely understood what he was handing me, a disease that would eventually cripple my son as his muscles slowly weakened. But what I read later absolutely stopped my heart and I thought I was going to die. I…

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At 6:23pm on January 30, 2013, kimmy watters said…

 am sorry nicole my mom was rush to the er and piece   of pork stuck in her throat 

 plus  issue with blood pressure .kimmy thank you for add me as your  friend. how has your day been how riley coping  with everyday. kimmy

At 6:28pm on January 29, 2013, kimmy watters said…

 hey nicole i am happy things are going well,. how is riley doing in school, i  live  and train very hard to bring notice to duchenne  and rase tons so our boys have a fighting chance. kimmy

At 11:29am on January 22, 2013, Nana said…

Hi Nicole,

I saw your questions regarding meeting mobility needs.  I  hope someone will eventually respond who lives in CA for more specific local recommendations. I currently live in the DC area and recently transplanted from IL.  I would recommend contacting your local MDA office if you haven't already and possibly look into Shriners Hospital.  We were able to get help to obtain a power assist wheelchair for my son through a wheelchair clinic at Shriners.  They helped us look into our options given our insurance and apply for a chair that would meet our family's need (at the time we were students and receiving health care through the state plan) We found out about the wheel chair clinic during one of our MDA's clinic appointments.  At MDA clinic they usually have a health services coordinator,social worker, PT and wheelchair rep/technician at part of their team you can talk to about specific medical needs your son has.   MDA also usually has a loan closet and may have a wheelchair you could use while you are trying to figure out what your son needs.  We started with Convaid folding wheelchair for my son (down side he could not propel himself and relied on others to push him).  At the time he needed only to rest periodically and was in and out of the chair throughout the day.  Now that he falls more frequently and gets tired easily he uses a power assist chair to get around school.  He loves the independence to get around the school's campus himself.  He is 10 and in 5th grade.  We currently do not have an accessible vehicle so we arranged special transport to and from school.  When we go out as a family we still use his folding chair which fits into the back of our hatchback.  We are just starting to look into accessible vehicles. Depending on your son's needs, some families choose to use a scooter for a time before obtaining a chair.  My son has some issues with his posture riding an adaptive bike- so we decided getting a chair he could drive himself was the best option for us.

best wishes to you and your family and feel free to contact me if I can be helpful :)Nana

At 3:57pm on January 19, 2013, kimmy watters said…

 hey nicole its kimmy wondering how you are doing, just  want you to know am here for you   if you need anything. kimmy

At 2:52pm on January 11, 2013, kimmy watters said…

dear nicole  welcome to  parent project, my best friend son has dmd, and   jake and so many of our boys who are my hero. kimmy

 
 
 

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