• Female
  • Strasburg, PA
  • United States
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Evelyn's Friends

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  • Fred Luchetti
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Evelyn's Discussions

Stopping deflazacort

Started this discussion. Last reply by Cathy Rozema Oct 27, 2013. 26 Replies


Started this discussion. Last reply by Ofelia Marin Jul 30, 2012. 4 Replies

Deflazacort question

Started this discussion. Last reply by Ofelia Marin Jan 15, 2011. 2 Replies


Evelyn's Page

Profile Information

About me:
33 yr old mom to two sons
About my family:
Husband- Rich
Son- Mason, 7yr olds with DMD
Son-Max 3
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Strasburg, PA

Comment Wall (10 comments)

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At 1:45pm on June 23, 2013, Joni Kishbaugh said…

Silly me, I just read you are in PA so are we!  Where do you take your son for treatment?  And did he go to MDA camp last week?

At 1:44pm on June 23, 2013, Joni Kishbaugh said…

Evelyn I feel just terrible, I just now found this post.  I am so sorry.  We ultimately decided not to stop the prednisone.  We started seeing a pyschiatrist who helped with some meds for his anxiety and we ended up having to switch to cyber school rather than traditional school.  He is doing really well on both counts.  Still ADHD out wazoo but we deal with it.

Again I apologize for not responding to your question sooner.  How is your son doing?  Is he on Prednisone and were you considering stopping it?  What state are you in?


At 11:16pm on November 4, 2009, Polly Sundeen said…
Hi Evelyn! So glad you found me on here...it's been a while since I have checked my page and for some reason I'm not getting emails about posts. It was really nice to meet you also - how are you doing? Hopefully you are all keeping warm and healthy...we've been trying to stay away from everyone with h1n1...and finally got our vaccinations today. So 2 more weeks and I'll feel safe. How is Mason? are you on facebook? if so...I'm there all the time - look for me there too. ok? Love to chat w/you more.
At 5:21pm on July 15, 2009, Jacobs Mommom said…
Thanks for responding Evelyn. We are having a fundraiser meeting at my home at 1031 Ferry Road, Doylestown on Saturday, July 25. I hope you and your family can make it. Bring swimsuits as we have a pool and the kids will be swimming. It starts at 12 noon and everyone is bringing something to eat. My number is 215-345-7421 if you need to reach me. We will be on vacation next week but will be home Friday.

At 7:30pm on July 13, 2009, Darcy Tumminello said…

Does you son have deletions 51-55? If so, there must be something in PA water. I found one other with same deletion in PA. Have you been to Dr. Wong?

At 9:42am on May 11, 2009, Jacobs Mommom said…
Hi Evelyn:

I see you live in Straburg which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.

If so please email me at donna@donnadoolittle.com so I can put you on the mailing list.
At 7:03pm on May 5, 2009, Dana Edwards said…
Hi Evelyn, I am so so sorry it took me so long to get back to you. Are you closer to NJ? I haven't hooked up with anyone yet in NJ. I did meet a wonderful woman from Lebanon PA who has a beautiful little 2.5yr old named Levi and she belongs to the PA group. If you go on my site her name is Perlita she has 3 boys what a great lady. If you don't mind what is your sons deletion? Tanner has a large in frame 3-36. I am a stay at home mom with 6 crazy kids. They are awesome and the older ones are involved in everything. I look forward to hearing from you. Talk to you soon. Dana
At 9:15pm on March 16, 2009, Jacobs Mommom said…
HI Evelyn:

I don't know of anyone with boys that young in that area but there is Barbara Rush whose son is younger that lives in Perkasie.

I will have to look at a map to see just where Strasburg is from us. We do camping in the Lenhartsville area and are planning a trip out to Pittsburg this summer.
At 3:09pm on February 27, 2009, Jacobs Mommom said…
I'm not sure where Strasburg is in relation to us but we will figure out a place that will be in the middle if we can.
At 10:15am on February 25, 2009, Jacobs Mommom said…
HI Evelyn:

I am the MomMom of Jacob, 8 1/2 with DMD. My daughter and her family live in Lansdale, PA and I live in Doylestown, PA. Please go to the "Groups" section at the top of the page and join the "PA Families" Group.

We are hoping to be able to get everyone together sometime this year.


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