Perlita & Gordy Hains's Comments

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At 9:56pm on July 4, 2009, Dana Edwards said…
We are to funny!! I am in a room w/ a computer and said let me check out to see if anything came up. I see strongest toddler. WHO is the last to write Perlita!! I love you my friend. I will call you tomorrow and if you get a chance call me.
At 12:22pm on July 4, 2009, Darcy Tumminello said…
Hello Perlita,

Found you on PPMD and thought I would drop you a line. Have a great 4th and enjoy those handsome little guys. What a beautiful family. Conference was great. Do you and Gordy plan on going to Denver? Hope all is going well.
Keep in touch.

Darcy
At 12:56am on July 2, 2009, Anita Bullers said…
Hi Perlita,
It was wonderful to meet you and Gordy at conference. You have three handsome sons with great smiles. I'm so excited PTC124 is treatment that will help Levi. Keep thinking positive and know that your friends will keep little Levi and the rest of your family in our prayers. Come see us in Texas sometime!!
At 10:01pm on May 28, 2009, Paul Johnson said…
Hey Perlita,
Things are going well here - and summer is literally just around the corner - so it can't be that bad, eh? Things are progressing along well with the PTC124 study- we're just coming up on 6 months...
We aren't sure yet about this weekend and the meeting in Qtown - we had plans for Saturday -but one of us might make it up there to basically meet everyone and then head out. We won't be able to help much in the event coordiantion, as we are coordinating a 5k in October - so will be pretty busy with that.
We also aren't making it to Atlanta as we had already scheduled our vacation down the shore - so we're a little disappointed in the timing, but I'm sure you'll take good notes for us ;-).
Jo and I actually finally met with a lawyer last week to set up Special Needs Trusts for the boys... we've been a little lax in getting that done - but finally got our butts in gear and got it moving. How'd you get motivated so fast ;-)?
Hopefully we'll gget a chance to meet soon.
All our best,
~P
At 12:03pm on May 18, 2009, Sharyn Thompson said…
Hi Perlita,

I am sooo sorry - I TOTALLY FORGOT to reply to your request about using my poem in your talk. I would be honoured if you would be able to use it in some way - I am all for raising awareness, hence why I wrote and published the poem to everyone I know.

How is Levi doing anyway? Is he on steroids yet?

Sharyn.
At 11:29am on May 18, 2009, Amy Sienkiewicz said…
Thank you so much for all the information it is very helpful. I was wondering how old is your son Levi? Are there ever any events where everyone gets together?
I hope everything is well. Talk to you soon.
At 11:26pm on May 17, 2009, Erin said…
Hey there wow, Cal me I am up 281-213-3199
At 9:19am on May 12, 2009, Jacobs Mommom said…
Great Perlita:

The message board gets too confusing to use so we decided to use emails instead. Once I get your email I will add you to the group so that you get all of the details and I can catch you up on what's going on.
At 9:30am on May 11, 2009, Jacobs Mommom said…
Hi Perlita:

I see you live in Lebanon 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?

If so please email me at donna@donnadoolittle.com so I can put you on the mailing list.
At 9:51pm on May 10, 2009, Amy Sienkiewicz said…
Thanks so much. This is such a blessing. How old is your son and have you taken him to CHOP? So far we have been to the neurologist who did the blood tests and thats about it. Noah gets physical therapy once a week through early intervention which is free in our county. So I am wondering what to do next. My local mda office suggested CHOP so we are thinking about that. We also just found out that I am a carrier. We were hoping to have several children so we'll see where God leads us. Thanks again so much...I hope to keep in touch with you and will pray for your son Levi.
At 8:26pm on May 7, 2009, Dana Edwards said…
Oh we are connected!! I am afraid to write anything I just keep typing. I am cracking myself up right now. Doctor Bonnemann
At 7:46am on May 7, 2009, Sharyn Thompson said…
Hi there,
My gorgeous son James (my eldest, turning 5 in 3 weeks time) has a premature stop codon at Exon 22, very similar to Levi's. James was only 2 when he was diagnosed, back in August 2006. Yes, it turned our lives upside down, but in many ways our life has also changed in a good way (is that a weird thing to say?) We like to stop and smell the roses now, never taking anything for granted, and money is no longer important like it used to be (unless it can help find a cure, then I want all the money in the world to achieve that!!).

We are holding out hope that PTC124 (I never call it by it's new name) will be successful, and can't wait until our little boy is able to start taking it. It is the only thing that gets us through each day, to be honest. I read Jill Castle's journal whenever she has a new entry - we open it up to read the latest on Anthony's treatment, and hold our breath waiting to see if it has turned pear-shaped. I am so glad that it seems to be working well so far.

That, and our 2 beautiful daughters, and our little baby boy who is due to be born in August 09 and DMD-free (I'm not a carrier, no family history, but it still weighs on my mind!) keep us going! Fighting this fight! And I am hopeful we will oneday win!

Anyway, I've rambled long enough. I hope to get to know you through this site. YOur family is just gorgeous, and Levi? What a little angel! He is a special little boy, and he will change your family for the better - I know that James has changed ours!
At 4:04pm on April 26, 2009, Vonda Fox said…
Hi! Our family lives in Reading, PA (not too far from Lebanon!). Our 13-yr.-old son, Ryan, was diagnosed with BMD when he was 8. He also has a premature stop codon and is currently in the PTC 124 2b study at CHOP with Dr. Finkel. We still have our regular visits at Hershey with Dr. Giordano. Are you going to CHOP again soon? We'll be there May 13 & 14 again. Like you, we are praying for the success of this study, and other treatments on the horizon! God gives us the peace we need as we face this situation.
At 7:44am on April 24, 2009, Windy Jackerson said…
Very lovely family!! Our son Skyler was diagnosed in Sept 08. The news is still a shock!! Can't believe this is happening to our son!! I am expecting another child October 31. Will find out next month the sex of the baby. I am not a carrier of DMD nor is there family history!! That is what makes this so hard. Keep the faith..big things are gonna happen for our boys!! In our prayers always!!
At 9:51pm on April 23, 2009, Kathy said…
Hi! We have friends in Ephrata, PA. Not sure how close that is. How are you all holding up with the official news? We are also trying to remain hopeful for a treatment/cure. There seems to be so much on the horizon.
At 1:02pm on April 20, 2009, Wyatt's Mommy, Melissa said…
Thank you for your kind words. I appreciate your encouragement. Have a wonderful day. --- melissa
At 7:01pm on April 19, 2009, Niccole Papp said…
Hey, I know it has been a while but I have been thinking about you guys. Actually we were in Hershey yesterday and today. Sorry we didn't call. It was a little hectic. I had to drop Natalie off at my mom's house an hour out of my way then drive up to Hershey. Went to the show which was great then Michael was a little cranky ended up going to Red Robin then put him to bed. Had discounted tickets to the park so went this am and return home early b/c Natalie is sick. Would love to come back up there it is so nice and the park was great. Maybe we can do a family day sometime soon. So how was the appointment? How are you guys holding up?
At 11:15pm on April 14, 2009, Erin said…
Hi Perlita, you are all in our thoughts and prayers. Just know that I am hear to listen. I know this is such a hard time for you.
At 9:38pm on April 6, 2009, Jill Castle said…
I'm glad you are coming to the conference. I look forward ot meeting you. Let me know as soon as they give you the mutation.
At 12:20pm on April 6, 2009, Paul Johnson said…
Hey Perlita - drop me a line with the results if you *finally* get any today. Thinking of you and your family and I hope things go as well as can be expected today.
~P

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