I am the husband of my high school sweetheart and the grateful father of 3 cool kids. I make pretty web stuff..........
About my family:
I am happily married and the proud father of three wonderful children. Hannah 19, is a sophomore at the University of Minnesota, Andrew 16, is a sophomore in high school and his younger brother's best friend and hero. Cullen 11, was diagnosed with DMD at three months of age. We live in west central Wisconsin where we are always in search of new "barrier free" ways to have fun while we cope/cure Duchennes.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Eau Claire, WI
Cullen dancing.........I can't get myself to take this down....although it stings every time I see it. Cullen stopped walking about three months later.
cont. We really just want him to have the endurance to experience life while he is here. Some other things: When did Cullen start using a wheelchair and when did you apply for a handicap sticker for your vehicles. Does he take Predisone?
Dr. Day is our Specialist at Gillettes, what a fabulous Doctor! Sawyer's deletion is 49-50. We aren't sure at this time if the trial is though Prosensa-GSK or AVI. We often are playing phone tag with the folks in Columbus to get any info. My hubby just tells me to be patient and will find everything out on April 4th. (I'm really a type A personality and waiting is not my style :) We know that if Sawyer "passes" the physical therapy eval in April then the projected start date is June 1st. We will travel to Columbus once a week for 6 months and if Sawyer shows growth, strength and/or endurance then he will participate for another 6 months. There will be a muscle biopsy at the start of the 6 months and at the end. Has Cullen every had a biopsy and if so what should we expect? The medication is given in the form of IV, which we aren't crazy about but Sawyer is pretty tough. We aren't sure if we will have to be there more than one day a week or on which day of the week it will be. The medication is proposing to "patch" 49-50 and he will produce dystrophin like in a Beckers form of MD. If you go on the Prosensa web site it explains this all in detail. According to Prosensa there will be 180 particapants from 18 different countries if they are all coming to Columbus I'm not sure. Also right now they are only 90% sure there will be finacial assistance for travel and lodging for families over the first six months. This is a little scary to my hubby and I, with flights and lodging it could cost about $26,000. The expense would some what less if we drove to and from but 13 hours one way with a 7 year old every week isn't our idea of fun. With this said we are are hoping to have to take off work only one day a week. I would say that 80% of our friends/family are supportive and the other 20% not so much (this makes it a little hard for us)Our theory as parents is this: We aren't looking for longevity, Cont...
Jeff- I loved the video of Cullen dancing! We are from New Richmond WI. Our son, Sawyer, is 7. Have you and your family ever participated in any clinical trials? We will be taking Sawyer in April to Columbus to have evaluated for a possible exon skipping trial. Just wondering how other families approached these subjects? Thanks -Brenna
Thanks for your reply to all my questions.. sorry if I was bit much. I am not that computer savy when it comes to facebook and myspace, even though I have both, I still can't quite figure out what to do with it all... so I understand!
I am sorry to learn that Cullen is not as mobil, but glad to hear that he doesn't have many other issues. Love his smooth dance moves..I get that way for TGI's fried green beans..You go little man!!
I am not sure how much longer Christian can hold out on walking, he falls way too much and getting up is just getting harder. I have that fear of spraining an ankle or breaking a bone so we may start using a scooter or something pretty soon, especially at school.
Yes he is a skinny fella, but I tell ya, we are going to struggle keeping weight on him , which can be just as tough as keeping weight off. Somehow I don't have that issue, wish for once I could!
Anyway, thanks again for all your help! Have fun lovin on your family!!
Funny, Christian's birthday is in December as well (11th). Since the boys are closer in age, how is Cullen doing..ie walking, DNA, heart problems? ADHD? Any school issues? Prednisone or Defl? DMD in family? Geeze, I just jumped right in didn't I ...sorry for my "intrusion".... Just trying to see how they compare, yeah I know every boy is different and develop at different rates, but just kinda wondering anyway...
I don't understand much about the DNA stuff, but I can tell you Christian is missing a strand of DNA from 45 through 54. He is still very mobil, however just last summer we have started using a wheelchair for things like the zoo or theme park ect. ( I'm not too crafty with the darn thing, I've only tipped him 2 x's and made one big wheel fall off...it's all good) This year it has been increasingly difficult for him to get up off the floor. He has a hard time getting his upper body erract. He wears daily AFO's attends PT 2 x per week (1 hydro session). His six month check up showed some tachycardia (sp?) but nothing they want to do anything with just yet. He is ADHD and has a growth hormone def., but we have chosen to not continue with GH injections ( why make him bigger so that there is more to manuver when he is older?) Ummm, let me see...oh, he is taking prednisone on the weekends only ( 60 mg) due to his hyperactivity. DMD diagnosis came after he turned 8, but since he was 6 weeks old, he had special services due to low birth weight and developemental delays. DMD apparently is not in our family so this was a fluke thing... But I'm kinda a fluke too. so he's not alone!
With our last dog on the verge of going to the big doghouse in the sky, we have decided to start the process of a canine companion. We actually are in the final phases of interview ect. I think we will be flying out in December for his last interview and then maybe start the training in Feb. So this is something new for us, I haven't seen many posts about this, I guess I will start one soon...
Like you all, we are fun family, we love to laugh and cut up. I can't imagine not having a great sense of humor! Besides the line of work I'm in...there is ALWAYS something to laugh about!!!
Jeff, I cracked up at your comment about my " pancake" abilities...We must share the same trait!! :) Ok, I have to say that Cullen is just as sweet as can be in your photo's!! Looks like you all are a fun family, how old is he?
I see that you are in Eau Claire, we are not too far from you. We are just about 20 min south of the twin cities in Shakopee, MN. We have family in Marshfield so we come your way fairly often. My son is 6.5, will be 7 in October. What MD do you go to for Cullen? I saw that you were having trouble getting a script for your deflazacort, we get our script from Dr. Day here at the MDA clinic at Gillette in St. Paul. We have ordered our meds from both Masters and Getcanadiandrugs.com and we much prefer Masters. It took 6 weeks for getcanadiandrugs.com to get us our meds. We ended up having to order from Masters in the meantime to get enough pills so we didn't run out. On that note, we are a bit overstocked right now and plan to keep it that way, so if you find that you run out of deflazacort before your next shipment arrives we are more than willing to loan you some. We can certainly meet you at a halfway point between our two towns. We have 30mg, 6mg and 1mg tabs.
Also, we had our meds held up at customs in January, so you have to make sure you have a perscription (we didn't at that time), but we did find the person to get them released at the FDA/customs and posted it on the old message board for PPMD or we also kept for our own personal info in case you ever have that problem.
Take care and let us know if you get to low on meds and need to borrow until your shipment arrives.