"It is difficult to always come up with the extra energy and effort required, and sometimes it just isn't going to happen, and that's okay. But I think the photo you attached explains it all : that smile and the sunshine resting on his face…"
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Leresa
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- Independence, MO
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Leresa's Discussions
Now I understand why social isolation is so prominent
Started this discussion. Last reply by Conrad Klahn Dec 29, 2016. 1 Reply 0 Favorites
Social isolation is starting to become more and more real to me. When A simple task turns into a trial. The little things like going to the grocery store, an event, the pumpkin patch or even just to…Continue
fearful of the future
Started this discussion. Last reply by Tracy Carbaugh Jul 22, 2015. 1 Reply 0 Favorites
OK so I'm a 25 year old single mother. I am terrified of the future because I know that Mj is only going to get heavier and weaker. I have little experience in caring for a dependent adult. Granted…Continue
similarities in diagnosis
Started this discussion. Last reply by David Jul 6, 2015. 3 Replies 0 Favorites
Mj has a partial duplication including exons 2-47. I was wondering how unique my son's case is. Does anyone else have the same classification? I'm just wondering if there is any similarities in the…Continue
participating in research trials
Started this discussion. Last reply by Robin Taylor Jul 9, 2015. 13 Replies 0 Favorites
Hello everyone, my son is seven years old and was recently diagnosed with DMD about a month or two ago. I would like to start him on steroids as soon as possible. His doctor has suggested entering…Continue
Leresa's Page
Latest Activity
Conrad Klahn replied to Leresa's discussion Now I understand why social isolation is so prominent"Overcoming obstacles is not trivial. We dealt with this yesterday going to the hike and bike trail, that while accessible once you get there, parking and getting to the accessible entrance meant walking in the street and around sidewalk barriers and…"
Leresa posted a discussionNow I understand why social isolation is so prominent
Social isolation is starting to become more and more real to me. When A simple task turns into a trial. The little things like going to the grocery store, an event, the pumpkin patch or even just to a friend's house. Everywhere we go there's stairs to climb an obstacles to tackel. I wish that we could have a "normal" family outing but instead we have to figure out how were going to make it to the bathroom, through the gravel road in a wheelchairOr just being reminded every where we go of the…See More
Leresa is attending PPMD's event
[Upcoming Webinar] SareptAssist Patient Services Overview at Online Webinar - Eastern Time Zone
September 26, 2016 from 1pm to 2pm
Monday, September 26th at 1pm ETPlease join Parent Project Muscular Dystrophy and Sarepta Therapeutics, Inc., as we host an informational webinar on Monday, September 26th at 1pm ET about SareptAssist, Sarepta's patient support program. To learn more visit www.SareptAssist.com. Speakers:Pat Furlong, Parent Project Muscular DystrophyDana Martin, Sarepta Therapeutics, Inc.Dan Madden, Sarepta Therapeutics, Inc.All members of the community are welcome to…See More
Leresa joined Anthony Stoops's group
Kansas City Area DMD families
All families with DMD/BMD children, in the Kansas City area, are welcome to post.
Leresa replied to Ann Rose's discussion Pain in DMD? How to know his limits?"My son is seven. He too often complains about the pain mostly in legs sometimes in his shoulders. From my understanding the pain is caused by the contraction of the muscles. The pain usually occurs after he's done had a very active day. LikePT…"
Tracy Carbaugh replied to Leresa's discussion fearful of the future"My advice is to slow down. Take one day at a time. Each stage will be different and have its own struggles. They will build on one another, preparing you for the next stage. By the time your child reaches adulthood, you will have grown and matured…"
Leresa posted a discussionfearful of the future
OK so I'm a 25 year old single mother. I am terrified of the future because I know that Mj is only going to get heavier and weaker. I have little experience in caring for a dependent adult. Granted he's only seven now and easy to lift, carry, maneuver. But what about when I am no longer to do these things by myself. Is there any prep courses or classes that I taketake? I was thinking that I should get cna certified or somethin. Any help would be greatly appreciated.
Leresa replied to Nicole Fry's discussion As things progress... in the group Adolescence (age 7-12)"I feel like you were just describing my 7year old. Must I say that I am terrified of the future. I do find comfort in talking to others who "know " as well."
Leresa replied to Vanessa Harpole's discussion Talking to younger siblings about DMD in the group Adolescence (age 7-12)"There are some kid friendly videos about DMD on you tube. There's one that is animated that I used to educate my sons cousins. There is also one on brain pop.com but you have to be a member to view it.
I hope this helps!"
Profile Information
- About me:
- Single mother of 2, full time college student & bartender
- About my family:
- 5month old daughter, Mariah. Son, Michelangelo, with a partial duplication including exons 2-47.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Michelangelo
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City:
- independence
- State:
- mo
Comment Wall (1 comment)
- At 9:41am on July 12, 2015,
Mirtha said… - Hi Leresa ... My son has a deletion of exons 45 to 50 . My husband and I are still very unsecured about starting him on steroids but I also understand it's the only medication that has demonstrated that can delay progression . The only reason my little one got diagnosed at this age its becuase every time I has brought him to a specialist for the last 3 years to see why he would not do certain things doctor would tell he was fine he was just not developing at a normal speed , until I found a video in youtube with a kid with DMD and in him I saw my son . for now my Nico is healthy , having difficulty running and going up the stairs . How is your little one doing ? I found some supplements here that you can look for and maybe other parents can comment too . Those are Protandim and Idebenone . Best of luck . My personal email : mirthareyes1@aol.com
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