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danielle Female Beaufort, SC United States: Favorite

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Duchenne Smiles

114 members
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North Carolina/South Car…

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Deletions

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danielle's Discussions

spinal fusion surgery

Started this discussion. Last reply by danielle Jun 20, 2015. 4 Replies 0 Favorites

As you all know my son is 10 years old now and the doctors are wanting him to have the spinal fusion surgery. What are the thoughts on this particular surgery? How many kids have had this and came…Continue

our boys and control in the bathroom

Started this discussion. Last reply by Michelle Scaglione May 6, 2015. 5 Replies 0 Favorites

How many of you have boys that are having a hard time using the bathroom? Such as not knowing they have went in there pants and afterwards still not knowing until they have been shown. My son has had…Continue

our boys

Started this discussion. Last reply by danielle Mar 15, 2013. 3 Replies 0 Favorites

It breaks my heart to know that things are so bad for our boys. I have seen where 5 little boys have lost their battle with dmd. It is scarey to think about that one day its going to be our little…Continue

mda walk

Started Jan 21, 2013 0 Replies 1 Favorite

We take part in the mda walk in charleston every year and last year we raised almost 1,000$ but this year we have only raised 150$ it is discouraging when i look at last year and this year because…Continue

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Profile Information

About me:: I gave birth to the best little boy i've ever met. He just happens to have DMD. But that does not define who he is or what we will become.

About my family:: My husband and son are my life

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

Age(s) of child(ren)/individual(s) with Duchenne:: 13-18

City:: beaufort sc

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Danielle's Blog

How Do We Deal

Posted on February 8, 2015 at 2:00pm 0 Comments 0 Favorites

As parents of boys with dmd how do we deal? Our boys are wonderful and we love this dearly but how do u deal with having your heart broke at every doctor visit. As most of you know a few months ago we were being sent to a lung specialist and another heart doctor. Well we finally had both appointments and the heart doctor couldnt even find his LVH now i dont know if that means i have a crappy doctor this time or if by some chance it corrected itself. However the lung doctor wasnt quite so…

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what comes next

Posted on November 29, 2014 at 8:56pm 2 Comments 0 Favorites

As most of you know my son Jacob has been dealing with DMD since he was 4. Well we keep getting news and all of it bad I'm just wondering when does the bad news stop and we get some good news.

On our last visit to the doctor it went as it usually does except for the fact that he had been sick for over a month. And the doctor cant explain why so we are having to wait a month to see a specialist for his lungs because they think they are to weak to fight a common cold. He is still…

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By my little jacob

Posted on April 14, 2014 at 10:03pm 1 Comment 1 Favorite

I'm as small as a chair.

I'm as strong as a gorilla.

I'm as quiet as a snake.

I'm as wiggly as a worm.

I'm as fast as a tortoise.

I'm cuter than a button.

I'm more loving than a puppy.

I'm soft like a pillow.

I'm perfect just like I am.

When a 8 year old can write this and be happy with the way they are why cant adults be that way to? We may not think that our dmd boys are perfect and we may try to find ways to fix them…

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what is there to do now?

Posted on April 14, 2014 at 9:57pm 0 Comments 0 Favorites

We went to the mda clinic on the first. The doctor there told us that my son doesnt need to wear his AFOs (leg braces). This made my son and myself very happy because he hates wearing them. Well after being told this we went to the pt and she informed us that he needs to wear them regaurdless of how strong his ankles are because with him being in his wheelchair his heel chords will get tight and he wont be able to take a step. After my son heard this he got scared he says im scared not to be…

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Comment Wall (16 comments)

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At 8:08pm on November 14, 2015, danielle said…: I know it has been a while Jacob had the spinal fusion this summer. He is in constant pain now. Still losing muscles rapidly so I'm still at a loss.

At 8:35am on January 26, 2015, Jacobs Mommom said…: I'm so sorry to hear that. Duchenne manages to break a little piece of our hearts everyday and it hurts so much to see our boys having to deal with this:(

At 11:29am on March 5, 2013, Susanne said…: Hi Danielle. Give my Jacob a big hug. I love you all

At 6:28pm on January 30, 2013, kimmy watters said…: hey danielle just want just to touch base how are doing heard that there a big strom today,kimmy

At 9:02pm on January 29, 2013, kimmy watters said…: that awsome how was your day, my jake loves mario brothers game. does yours.kimmy

At 6:32pm on January 29, 2013, kimmy watters said…: hey danielle i just love the picture, of jacob how was your day today the park is so beautiful is jake is able to walk and out side much.kimmy

At 7:20pm on January 28, 2013, kimmy watters said…: yes how is misty vanderweele how is doing, we have lovely summer it the only time we see the sun and its get very warm. so mom and i are out side every day. oregon has better beaches then we do. but we get the most awsome fish salmon omg it is to die for . the house we live in been in the family for 50 years, and some one has live here for 72 years. its old and gets very cold. kimmy i send you my email with the send message.

At 6:50pm on January 28, 2013, kimmy watters said…: yes danielle i had fablous day, you know i choose to be a happy . i was having issue with sinus. its cold a damp here am great flu that it has warm up bit. how is your jacob doing is still having issue with his heart. my heart is just so sad about misty. what about you and your jake do for fun . it is very beautiful where you are i saw some picture of sc. did you get any damage with the stroms kimmy

At 2:17pm on January 27, 2013, kimmy watters said…: i am sorry that the kids tease him in school, its sad in today world that kids are so mean, does jacob have many friends,. i tease to and belive or not there are people who do not like me. i just ingorne them. the bully are angry or they are hurting . my buddy jake is my hero and inspiration all the boys who have duchenne are it makes me feel great ful for the little things .kimmy

At 1:02pm on January 27, 2013, kimmy watters said…: daneielle i love the picture of jacob, how is coping with his challenge, does he enjoy car racing like tony stwert sorry spelling not my cup of tea. how jacob doing in school is he enjoying it. taking a break today watching foot ball at four. i live in the seattle area,its beautiful my wonderful mom just turn 70 enjoying the time we have. i plain on getting out of my commfort zone will doing hike up mt rainer . have you ever been to washingtion state. kimmy