I'm a happy wife & mom and adroe my family. I've been married for 18yrs & have 3 spectacular sons; Luke (12), Lance(10), Levi (6) We live in Lebanon, PA, close to Hershey. I work part time as a Marketing Director for an out-patient Rehab company & love it.
About my family:
Our kids are truly our life. Luke is a tremendous athlete, passionate about baseball & competing in 5K's (usually beats most of the adults). Lance is our "clown". He's a laid back, quiet, yet fierce competitor. Levi is our "Angel". He completes our family
Gordy, my hubby, is an amazing dad & friend.
My parents, (who live around the block) & brother (Pediatric Resident in Chicago) have been beyond supportive since we found out about DMD. On Xmas Eve 2008 the news was given to us & we truly didn't see that coming. It's been brutal as you all know. After speaking w/ a DMD mom my heart aches less, Jill Castle gave me back my life & the hope that I needed to hang onto.
We now know Levi has a Stop codon, point mutation at Exon 23 - he will be VERY ready for PTC124 if/when the FDA approves
Name(s) of child(ren)/individual(s) with Duchenne:
My son Lance has DMD. For the last year we have been doing an experimental therapy. Lance is the ONLY person in the country - probably the world - to be trying this therapy. We are having what I feel is AMAZING results and I think now might be the time to share this good news so that you too might consider the therapy for your child.
First - I want you to know that I have no affiliation with this company at all. We only looked into this therapy because my husband had a stroke and was using this photobiomodulation to help himself with recovery. The company, called The Hope Institute, suggested we treat Lance to see what results we could establish and we decided we would. After all, it is only light therapy and it CAN'T HURT A PERSON IN ANY WAY WHATSOEVER.
Here is the results after 10 months of therapy:
BEFORE THERAPY AFTER THERAPY
Standing - 10 seconds Standing 50 seconds
Blood Pressure - high slightly elevated
Walking - 3 steps with assistance walking 46 steps with assistance
attitude - sometimes depressed / occasional crying jags Lance is always happy
Now the doctors want us to get a gait trainer! Yes!!! That's right! THE DOCTORS want to get Lance walking even more!! Now THAT'S progress!!! I'm SO Excited!!
The doctors are excited about Lance's progress too. Can you believe it? Yes, I said progress. One doctor even said "progress isn't a word we use with Duchenne patients, but in your case we can say it. That's astounding."
Now, let me tell you this… I am a mom who has a kid with DMD. I know the hope we all hold out for our boys. I also know how desperately we all want to grab onto any therapy. I know we all need to find our own path and advocate for our sons. That is why I have taken Lance to this therapy for a year and I have not shared this with you. I wanted to make sure these results were real. I do not want to give you false hope or false results.
Gosh, I feel like I sound like a "too good to be true" infomercial. I get that. I know what it sounds like…but I am here to tell you that this is factual information and it is time to open this therapy up to all families who would like to see what this light therapy can do for your child.
Now, the Hope Institute in Easton Pa. ( located in Eastern Pa. about a 15 minute drive from New Jersey) is looking to try this therapy on some new patients to see if they can duplicate the results with others. Yes, your child could be that person! Even if it stops the progression of the disease, that's positive results!! I know…it doesn't seem possible but I am here to testify that all you are reading above is true and accurate.
Do you want to give this a try? Remember, there is NO NEGATIVE SIDE EFFECTS! It's only light therapy. It's kind of like laying under a tanning bed 2 or 3 times a week, except you don't get tan!
I don't know if The Hope Institute's web site has been updated as of yet, they used to be ATA Revitalization. You can look them up through Google and see what they do. Yes, treating DMD and having positive results was hoped for, but not expected.
Call Toni Chicci, the owner, directly. She is waiting to get your son or daughter under these lights to see what positive results we can document for you. Just think! If we can duplicate these results with other MD patients, THEN, we might change the direction of this disease for the world! What an amazing blessing this would be. I have hope that this might be
Hi Perlita & Gordy Hains. Do you attend the Circle of Friends meetings in Hershey ( 30 Hope Drive). It's for Muscular Dystrophy patients. There is one coming up on Sunday, December 2 from 1 - 2:30. I will be there if you would like to meet. I would definitly love to get together some time. My email is firstname.lastname@example.org.
Hola soy de Peru, Lima..siempre leo las noticias de los estudios y hoy me atreví a ingresar, yo tengo un niño de 11 años com DMD se lo diagnosticaron con una electromiografia hace 3 años, pero aqui siempre me dicen que no hay tratamiento, que la enfermedad no se conoce,, en estos 3 largos años tan tristes,no encuentro donde tratar a mi hijo, solo toma esporadicamente hidroterapias y fisico, pero me incsribi en esta red y encuentro noticias de que hay medicamentos y ciertos avavnces, no se como yo podria acceder a algun estudio que pueda hacer a mi hijo, tampoco entiendo muy bien lo del salto de exon , pero quisiera que mi hijo se realize esa prueba, él a lo largo de estos 3 años ha perdido bastante fuerza, camina balanceandose y sube con dificultad las escaleras...Le agradeceria que ud. me informe un poco más sobre los avances y si mi hijo puede acceder a ellos. yo traduzco las paginas que me envia el ppmd y les estoy muy agradecida...al igual que todos los padres de los niños con DMD me siento impotente ante todo esto, pero tengo confianza en que nuestro Señor tendrá misericordia con nuestros hijos. Gracias mil de antemano y Dios bendiga y proteja siempre a nuestros hijos. Esperando noticias suyas. Mi correo es email@example.com
Hi Perlita & Gordy: I saw your groundbreaking on facebook and just wanted to wish all of you the best of luck with the building of your new home. I am a member of PPMD and the grandmother of two little boys with DMD, Cole, age 6 and Jack, almost 5. Your boys are beautiful. Best of luck to you. Terry Porcaro
Hi guys - Lebanon, PA! Wow - I grew up in Ridley Park. Small world. We are currently overseas in Germany and don't know for how long. I guess it will depend on how things go from my son, Eli. It sounds like you are very involved - I look forward to talking with you more as we go through this. We only received our diagnosis in the last few months, and it's been tough. But, we are working together to get through this and to do the best we can for Eli. Are you going to CHOP? Do you recommend it?
Thanks for reaching out to us! In the last month we've taken our son Max to see Dr. Wong in Cincinnati and for the first time since his diagnosis have some answers and guidance. It is helping to have that knowledge.
Hi Perlita. This is Vee, the radiologist from Vancouver, Canada. It was great meeting you, but too bad it was on the last day of the conference in Denver. We will also be going through the process of designing an accessible home soon. So keep notes about anything helpful an we can compare notes earlier. I agree--no one should have to think about these things! You have a beatiful family.
I saw your posting re: building an accessible home. We are going through the same process, only at this point are looking to buy vs. build new. I sympathize, only because it is so frustrating!! You just don't really realize until you are in need of something very specific how elusive that thing can be. And you are right, we shouldn't have to be looking for it, or building it. I never dreamed a main-level home with an open floor plan would be so difficult to find.
I am about an 1:45 hours away from Toms River. Never been there though. We haven't met anyone near us yet that is going through this. As much information you can give your family, they really can't feel what we feel. I am pretty good at staying face, I am a veteran from the US Air Force and would like to say that my training has and will help me. This does take an emotional toll on us, but as I get focused on what needs to get done, I can push my emotions aside a little. Support definitely plays a factor on staying focused. I couldn't imagine going through this with out it. I hope that we can becom great friends and meet on of these days. God Bless,