cheryl i am sorry mindy colby are very good friends of cher burke. mindy son has duchenne. i am also a very strong advcoate for her son is also name jake. i am working on doing the seattle rock and half marathon in june to help rase money for a cure. kimmy
Cheryl, I'm just taking a few minutes out from a work break so sorry this won't be a very long email. I just wanted to say hi and give you a few things that might help...
I read once that most boys with DMD are pretty happy little guys who really don't feel sorry for themselves or wish that their lives were different. That was a huge comfort to me, and I try to think of all the rays of sunshine I can-- that he is not in chronic physical pain, that he can still laugh, that he doesn't have mental illness (my husband's boss has a son with schizophrenia, which has no cure and treatment is really hit-or-miss). I know families that have raised children in perfect health, but the child committed suicide before they even reached adulthood.
Duchenne is absolutely heartbreaking and horrible, but one gift it has given me is to notice everyday miracles along the way and be grateful for each one. We don't know what the future brings, and each case is so unique (I know of 2 brothers with identical deletions: one died at 15, and the other is still alive at 45). There are treatments, and even cures, being researched and developed. But there is no guarantee.
I'm not an especially religious person (not a Christian) but another gift from DMD is to force me to examine my spiritual beliefs. And I really do believe that some greater power (call it the "Spirit of Creation", or the "Mystery of the Universe" or whatever it is, put you together with a DMD son because you are the one he needs, and perhaps he is the one that YOU need.
Time to get back to work. Write any time. Love, Ruth
You are welcome to come here. We just moved into a rambler, which makes it easy. Colin can do stairs, though, so we can come there, too. Not sure about the weather, it could go either way. Let's communicate in the late morning to see what it looks like.
MDA support group meets the last Tuesday of every month, so there's one coming up on September 27, from 11am-1pm. They said that the location is "TBD". I got the email from this address: firstname.lastname@example.org (her name is Reda Lee). I could go with you if I can get somebody to babysit my kids (I work part time 2-9pm on Tuesdays).
I know, it is hard to comprehend. Whenever I see info about the progressive stages of Duchenne, I just kind of shut down, so I take it one day at a time and that's how I can manage. It's been about 9 months since our diagnosis, and Jason's been on Deflaz since January. His body has changed so much because of the steroids. Sometimes this is very sad to me but I try to focus on whether he is happy, and he seems to take everything in stride, thank goodness. EArly on with the Deflaz, it was awful -- his behavior was really bad and we wanted to stop-- but after about 4 months it improved and he is doing a lot better now. I hope your Jacob is doing well. Thanks for posting his picture, he is darling.
My little boy is 5-- will be 6 next month. He has pretty significant cognitive/social delays, though. It is kind of strange-- I also have a 3 year old daughter and they seem to be just about on par, developmentally (well, verbally very similar, but she actually has much better fine motor control).
I met with Jeni Ward (Lynnwood, has son Colin who's 6, maybe 7 now) and met with Char Burke (Seattle, son Will may be 9? 10?) and both of those boys have DMD but seem totally without any delays, either physical or cognitive. I was really hoping that my son would be playmates with those boys but he is in such a completely different developmental stage that they couldn't relate (but both Colin and Will are real sweethearts, and their mothers are too. If you have a chance to meet with them, it might be helpful.)
I had the same experience with Jennifer at MDA. After I met her in person at a hospital visit, I could see she was a helpful person and very kind, but initially she never responded to my emails or phone calls, so my first impression was disappointment. I think she has wanted to have a get-together for DMD families but hasn't been able to yet. She wanted to do a pizza night but I told her that some families are restricting what their DMD sons eat, esp salt & fat, and maybe I discouraged Jennifer too much because the pizza night never happened. I would let my son eat pizza but I have to get him to eat a lot of veggies and fiber most of the time because the deflaz and the DMD make him get constipated.
Does Jacob have any delays, or is he in regular school? My son is in developmental Kindergarten instead of standard.
I just want to reach out and give you a big hug because I know how awful this is. I am so glad you found PPMD because I think it is very comforting to have that connection.
This doesn't really have any bearing on anything, but just thought I'd let you know that I'm an adoptive mom (caucasian) and my son and daughter are Korean.
Anytime you'd like to get together, please let me know. I would really like to meet. I would be happy to make a support group of 2 with you if you'd like one. I know MDA has one but it meets on a workday afternoon and I can't go.
Cheryl, I will try to find the last newsletter I got from Jennifer Martin and send it to you-- the newsletter tells when the MDA support group meets.
Would you mind giving me your home email? If you'd rather not, I understand.
No, Colin does not take it. I don't know much about that one yet. I am still trying to figure out if we are going to get him going on protandim.
I am a little more conservative with what I give him, mostly because I have not had the chance to research everything, I probably can't afford most of it, and I don't want him to feel overwhelmed by all the stuff he has to take every day. I try not to read the posts too much, because it is very overwhelming. One bit at a time... let me know about where you guys live in Everett, and a time you want to meet on Sunday.
That is fine- wouldn't take me too long to get there from my school.
I am pretty open next week- could do it Monday, Wednesday, or Thursday. Would 12:30 work for you? Let me know which day and where- I can come to the east side of the freeway, I think there are better places to go over there! Looking forward to meeting you.
That sounds really cool, but we can't come. :( My daughter has a soccer game at 10:00 in MLT, and I don't think we could get there by 11:00. I'm bummed, that sounds awesome!! Thank you for inviting us. We will figure something else out soon.
BTW- my husband was a fisheries major in college. Now he works for Starbucks. But I bet he will be interested in your organization.
Have you guys been seeing Dr. Apkon at Childrens? She is really helpful. The MDA Office.... no help whatsoever. PPMD is awesome, also Cure Duchenne and Charley's Fund.
We don't have any help for the deflazacort- I think we pay about 300 dollars for 3 months worth through Masters Marketing. I am pretty sure our insurance covered most of the cost of the night splints. Exon skipping is something to keep us hopeful, but it is NOT a cure. You should find out which exon you would need to skip- if I know your deletion I can tell you. There is a lot of other research going on in regards to Duchenne. You should really consider gong to a PPMD Conference- it is every June or July. The next one is in Florida. I am planning to go in 2013- I have heard it is in San Diego. There is also a parent night that they have at the UW every year, usually in the winter sometime. Local scientists and researchers give a presentation on what they are working on. There is really so much to learn. If you want to get together over coffee, or even meet up at one of our houses with the kids (I also have a 9 year old daughter), I would be glad to go over it with you. Maybe just us meeting first would give us more of a chance to talk.
For therapy, Colin is on an IEP and gets OT and PT through the Edmonds School District. What district are you guys in- Everett or Mukilteo? He is going to start doing his PT in a therapy pool this year.
I can tell you what vitamins he is on- we get them at Costco. :)
Let me know if you would like to get together. I'm sorry you are having a hard time. This whole thing sucks. But we can get through it.