Hello Gina, I am new to this site and happy you requested my friendship. My son is 12 years old and was diagnosed very early (18 months) but what really brought me here was the concerns of some staff members at my son's school. my son has an aide with him all day. this is new this year and he is very comfortable with him but out of frustration occasionally my son will say things like i hate my life. however, i am not sure the aide knew how to handle this statement. I know this disorder can take a toll on him and the family but my son tends to say things out of frustration and not out of depression but I do appreciate their concern. anyway, my hunband and I have been reaching out more for emotional support such as seeing a councilor and of course this site to help us get through these tough years. I am from Clayton, NJ. sad to say there is nt many support groups around here that focuses on this disorder (DMD). How about yourself?
Glad to meet you! We live in Pottstown, PA. My boys Jake (almost 7) and Ryan (3 1/2) both have deletions of exons 46-47. We go to CHOP and work with Dr. Finkel. We try our best to do this thing day by day, but my mind doesn't always let me work that way. Jake is on deflazacort, and has lately had some issues with not growing. We'll be back to CHOP endocrinology tomorrow for some advice. How are your boys right now? Do you go to CHOP? We were also in Atlanta last year, but won't be able to make the conference this year. A family vacation is the priority this summer!
Hi Gina: I really enjoyed meeting you and your hubby in Atlanta and hanging out with you. I appreciate that you talked to me even though I am "not from New Jersey"....LOL Your pictures and video are great!! Beautiful family. Keep in touch. Hopefully, we will meet again at next year's meeting in Denver.
I'm glad you are hanging in there, but you have to because your kids need you. This MD sure does make you stronger than you ever thought possible. I certainly don't need to tell you about feelings, but I found out that a little bit of hope goes a very long way. Last week, we went to see the renowned Dr. Hoffman, the MD pioneer, as you know. The first thing he asked was how old Liam is. Liam was running, literally running all around his lab. We said he would be nine in about a month and a half. Point blank and straight faced, he said that Duchenne boys don't run at his age. They are mobile, but they don't run. Hoffman further said that the exon skipping 51 he was working on and that everyone is getting so excited about, would be the perfect thing for Liam as he is missing 48, 49 & 50. But when he saw Liam running, he said he may not be accepted to the clinical trials. Liam may be doing his own exon skipping naturally. That sent my heart into a downward spiral until Hoffman said that Liam would then have Becker MD. We now feel as though we have hope at either end of the spectrum. We have NEVER felt that kind of hope since this all started last June 12th when the diagnosis came down. Although the gray cloud still sits to the side, it is still there, but the days are so much better now and that little bit of hope stopped me from always looking to the end - the horrid end. I can now live more for each day and take stock in the fact that I've got an incredibly awesome kid who knows he's got MD and doesn't care. He has amazing self esteem and self confidence which carries him far.
From the photos of your family, I can see that you do much the same. You love 'em to pieces and are totally there for them no matter what. I have to think that there will be something for everyone soon because I cannot just have hope for myself and not others because we are walking down the similar road - a road that most people do not get or understand. All of your children are beautiful and happy and secure with you as their mom. Above all, they will be fine because you just cannot fake smiles like that. Let me know what you are doing for your boys medically and just as a mom.
Just saying hello and checking in on you........still thinking of you and your precious family! If you get on here send me a note so I know how you are or email me at firstname.lastname@example.org. We could exchange phone numbers and talk. I am a very good listener or a very good talker; I can be mad and sad with you or be the positive voice--whatever you need, I can try to fit the bill. Love to you all, Jill
Gina: I am so sorry to hear that your little guy was also diagnosed with DMD. We live the same situation in our family. My first grandson, who is now 4 years old, was diagnosed in March of 2007. Our little guy, who is 2 1/2 years old was diagnosed earlier this year. They both have duplications of exons 8-11. We live the same roller coaster ride of emotions as everyone else on this site. Some days are up, positive and full of hope, others are down and discouraging. I will keep your family in my prayers, especially since we have such very similer circumstances. Recently, when my daughter was still struggling with the decision to put her oldest son on steroids, Pat Furlong gave the encouragement she needed. She said to at least try because this will keep him stronger for all the therapies that are coming up in the near future. Statements like that give us hope. Terry Porcaro
Oh Gina!!! I just don't even know what to say. I am crying with you. Why? Why? Why? But we know there is no answer. There is no rhyme or reason. I will be praying extra hard for you and you family. All I can think to say is hang in there b/c I truly believe help is on the way. I think the use of utrophin will be the turning point of this disease, along with the other drugs to make up this cocktail they speak of. Read up on this--I think this will be here in 3-5 yrs. This will be for all boys. Trials are due to start early next yr. and since our bodies already produce this, it shouldn't be rejected. I would think this factor should make for a less complicated trial, and therefore be here quicker! Keep your chin up and I will so be thinking of you! If you need to chat, please feel free. My email is: email@example.com. If you to want to talk on the phone, just sent me a msg and I'll give you my home #. Take care, sweetie! Love, Jill
It was so great to meet you and your husband at the conference. I am sad that we did not get to hang out more! I was wanting to say goodbye Saturday nite (I had a 6 am flight) but Rhiannon (I think) told me you guys had already split.=(
The conference was great but was a lot to take in and I felt completely drained by the time I left. So much hope there but so much sadness, too! I would have loved to have had my husband there--he was planning on coming but started a new job and a new deal and just couldn't swing. He is coming next year for sure. Plus he could have helped "translate" and bring it down to my level=) R u guys going next year?
I am thinking on going to the advocacy conference in D.C. but it kind of scares me to think about talking to all those folks! But, if it will help our sons, then I will just have to get over it!
Hope all is well in NJ. If you're ever down this way, stop in and see me=)
P.S. You have a beautiful family! Love the pics!
Hey! I left you a voice message today. When you called my phone at the hotel I was sleeping!! LOL! I wish I could have seen you guys before you left. I was wiped out! It was overwhelming for me too...I was trying to take it all in and I just needed a brain break. The dinner Saturday night was very nice. We went and had a drink at the Field House after, but Michelle and I didn't stay long because we had an early flight home. If I don't make it to NJ in Sept. with my hubby, I'll make sure we take a detour in March when we go to DC and NY so we can come and see ya'll. We won't have the kids with us, but I would love for Ray and Craig to meet and to just visit with ya'll!
Yes, next year is a definite. Glad you got to go. We are always so comforted to surround ourselves with our ppmd family at conference. Your kids are cute, too! When I figure this thing out, I will add more photos! Not very computer savvy. Good to be able to at least email!!! Take care, Angela