Darcy Tumminello's Page

Hi Darcy,
Cooper's doing well. he's 8 and also in 2nd grade. He does well in school. instead of PE he's in a special reading class and speech therapy, this helps out. He's a happy little guy. Our only child. He has a deletion on exon 30, a frame shift caused by one stinkin missing amino acid!! We also go to Dr. Wong. We're heading back in May. he takes Deflazacort along w all the supplements. We've been having a difficult time w night splints, just got a new pair, wish us luck!
Where in Pa do you live? I'm from Stroudsburg!

Darcy,

Brandon is doing very well. In fact, he and my husband went cub scout camping this weekend and he hiked, played tug of war and kept up really well. What a blessing! I have a link to an article by Dr. Poysky on behavior that I'd be glad to send you. I received it from a friend in Charlotte. What's your email address? When do you all head back to see Dr. Wong? We'll be there on Januray 6th.

Well our Christians are indeed special and well loved. Mine came to me with 3 of his other siblings, CPS had removed them due to addiction and neglect. I had to see the system seperate the oldest brother and move him to his dad. But I fought long and hard against birth family members, who weren't able to pass home studies, who tried to seperate the group further and adopt individual because they only wanted "their blood" and not the group. Lucky for me, the State of Michigan, kept these kids together in the only stable home environment they came to love. My son shows the effects of DMD in his every move, the way he walks, the huge struggle going up the stais, climbing into the car, pulling shut the car door, getting up off the floor. He is going into day and night AFO's. We are waiting for the genetic test to come back from Mayo. He runs still too but very slowly and tires out quick to a walk. I have seen major changes in just the last 6 months. I told the birth mom and grandma and they too underwent genetic testing. Luckily birth mom is fixed--no more kids for her. We still have to initiate testing to see if my daughter (Christian's bio sis who is 5) is a carrier. I know they don't recommend it until she's older, but I have to know. My family is crazy chaos but I love it and would not trade them for a million $, umm on second thought...no still wouldn't. lol

Hey! I do remember you. How is your son? I think our boys are about the same age. Brandon is 7. I was wondering the same thing about exon 50. I understand that there is certainly something in the works for next year. Have you heard anything lately? Look forward to hearing from you.

I'm remembering now that the PT in Cinci told us that the MDA now requires you to first see what your insurance will pay and then they'll help with the rest. I think they've been hit pretty hard, like all charities, by the economy! But Debbie Dupree also recommended I see what's in their loaner closet. I may just find a stroller for now--there are strollers that could seat my daughter (who needs to be restrained :) but also have a place for an older child to stand or sit in the back to ride along--that may work for now. I don't feel ready for the manual chair just yet. Delete Comment

Graeme is 4 and only weighs about 35 pounds. Did your insurance pay for the Convaid chair?

Thanks for the note. We enjoyed our experience with Dr. Wong and the others. It was a reality check, so that makes it a little emotional for us. We are starting Deflaz soon and although I'm glad we are, it makes me a little nervous. We talked to them about adaptive strollers or manual wheelchairs for Graeme now, which was a little tough. Trying to decide whether to get a regular stroller for Graeme (and his 18-month old sister), or try the manual chair. We did find out that we don't need to be so aggressive with his PT--he was going 2x a week. His phys therapist disagrees with our decision, but I have to trust Dr. Wong and the experts in Cinci!

Hello Darcy. Sorry to hear about your son's fracture, I hope it heals well. Cory starts school 8/31 and he is absolutely not looking forward to it. Should be interesting, he started Deflaz in July and it seems like he is getting pretty crabby in the afternoons. Keeping my fingers crossed that he gets along OK in school. Summer has certainly run away from us. I hope all goes well for your school startup.

Hey Darcy - glad u found me:) Holiday was great had the entire family over for picnic & fireworks. YES, we are planning on going to Denver. If er can pull it off financially. We are considering Disney in Jan for the PPMD marathon. My bro may run it. Hope all is well w/ you & keep praying for our miracles.