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.
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.
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!!
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,
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.
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.
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.
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.
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!
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.
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!!
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.
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?