Barb Rush
  • Female
  • Perkasie, PA
  • United States
Share on Facebook
Share

Barb Rush's Friends

  • Amy Sienkiewicz
  • Stephanie Fielder
  • Lauren M Fritz
  • Regina
  • Tanya Fleming
  • Angela
  • Jacobs Mommom
  • Paul Johnson
  • Lori Ware
 

Barb Rush's Page

Profile Information

About me:
I am a stay-at-home mom and a Tastefully Simple consultant(www.tastefullysimple.com/web/brush) and I donate 15% of all my sales to help find a cure for DMD..
About my family:
I am married to Norm and we have two boys Brenden (DMD) & Derrick
Name(s) of child(ren)/individual(s) with Duchenne:
Brenden
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Perkasie, PA

Comment Wall (9 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 6:26pm on July 13, 2010, David G Evans said…
Hi Barb

Hi name is David Evans

I am 17 years old and i have Duchenne Muscular Dystrophy. I live in Robesonia PA. I have been searching for someone to talk to who has the same condition i do. Do you anyone i could talk to.
At 2:30pm on February 23, 2009, Niccole Papp said…
Hey Barb,
We talked a while ago before the holidays and unfortunately I had to miss your tastefully simple party. I am getting a little more settled with the new baby and Michael. Would still like to meet up with you since you are so close. Hope all is well.
At 1:11pm on January 22, 2009, Angela said…
I feel like I am torturing you with more suggestions, but just want to make sure that Brenden doesn't miss out, if he doesn't have to. Jack wont take it if it is mixed with something cold, it's too lumpy. We have to use warm water and he drinks it through a straw to make it go quickly and so he doesn't taste as much. Talk to Dr. Finkle and see if they can make an exeption and let Brenden take it in a spoon full of yogurt, vanilla icecream or something!! There has to be a way and I sure hope they find it!
Good luck! I know this all isn't easy and then add this and I would probably be going crazy!
Ang :)
At 12:44pm on January 19, 2009, Jacobs Mommom said…
Hi Barb:
I just read your post where you were talking about giving up on giving Brenden the PTC-124. I hope you have found a way to give it to him by now. Jacob doesn't have a stop codon mutation but when we started to give him vitamins and coQ-10 we had some difficulties at first but then I told him that if he held his nose he wouldn't taste the pills. This has worked great. I'm assuming the medication is in power form? What about taking it to the pharmacy and have them put it in capsules for you? Or have them try to add a taste to it? Something that he likes?

If that doesn't work and you think a mentor like Jacob would help him just let me know. Jacob understands now what the medicine is for and doesn't give us any problem taking it. Maybe he could talk to your son for you.
At 3:42pm on December 23, 2008, Melanie said…
So sorry about getting Brenden's name wrong. I'm still figuring out all the where's and how's of the new site, and read the post below mine and stole the wrong son's name to post to you. :) One day I'll get the hang of this...

I wish you all the luck with Brenden's PTC intake. I hope it works wonderfully for him...your son's in my prayers. It's so very hopeful to see at least some of "our" boys with more options medically.
At 4:19pm on December 22, 2008, Melanie said…
Hi Barb -

I read that you're having difficulties getting the PTC124 into Jacob. We don't qualify for the study, but my seven-year-old is taking creatine (a powder) and carnitor (a liquid) which we did a bit of experimenting with before finally finding that he does best with the meds when I mix them with...soda. I know, NOT healthy, but we do what must be done. I don't know if it's a better flavor, if the carbonation helps the texture, or if it's just the novelty that I'm letting him have POP...but he doesn't complain nearly as much as he used to.

I hope you've already resolved your difficulties, but if not...maybe you could give soda a try. We use Sprite. Good luck!!!
At 9:56pm on December 16, 2008, Jacobs Mommom said…
Hi Barb:

Jacob goes to Special Equestrians in Warminster on Street Road. He loves it and it has really helped him with his core muscles and keeping his balance. They do a competition in the summer and he won 2nd place in his category. They just obtained a truck to transfer the horses to other events so he is very excited about competing other places. They also are thinking about starting a summer camp for the kids.
My phone number is 215-345-7421. Call anytime:)
Maybe Jacob and Brenden can get together some time.
Donna
At 9:24pm on December 16, 2008, Lori Ware said…
Hi Barb! Good to see you! Why won't your little guy take the PTC124? I am following on caringbridge Anthony Castle who is on it. He seems to be doing well.
I hope you all have a very Merry Christmas!!!
Lori
At 1:31pm on December 16, 2008, Jacobs Mommom said…
Hi Barb:

My name is Donna and I'm the MomMom of Jacob, 8 years old with DMD.
I live in Doylestown and my daughter and her family live in the outskirts of Lansdale.

Please join the PA Members Board so we can hopefully all get together next year.
 
 
 

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service