Thank you for reaching out to me. I had been very busy trying to get Danny the services and help that he needs because I have not been able to help him due to my back and neck pain. I would like for our boys to meet. Will call you soon.
I am a mother of 18 yr old son named Danny. He has duchene muscular dystrophy.
We live in southern Delaware, close to Rehoboth Beach. Danny is shy and have difficulties of having friends. He will be very glad to contact you.
How are you.....we spoke a couple of months ago. Our family has just moved to Potomac, MD.....we are happy to be here and looking forward to a new beginning.
We just fitted Saij for a power chair....could take up to 3 months to come. In the meantime, I wanted to ask you about toileting, showering and transferring him. Do you have some tips on how to do this without breaking backs. I would like to get together and have our families meet. Let's discuss when we might be able to do this.
hello baljit....thank you for reaching out. My son Saij is nearly 8 and just in the last week has lost the ability to walk and even stand. It has been devastating for me as it was a little premature in my mind and the development happened almost overnight.
Where are you located....my family and I are in the process of moving to MD....I am originally from NY but have lived outside the US for the past 10 years through my husband's job and have just relocated back to the States. I am looking for guidance and advice on all aspects of medical health insurance, medicare and other resources for healthcare, family counseling and other related issues.
I have a 15 year old daughter as well. We are all happy about our move back but at the same time, having been away for so long, feel somewhat lost about what to expect in all aspects of life.
Would love to hear about your story and your son with DMD.
Baljit, Since our diagnosis I have tried to find other Indian families that are going through the same emotional roller coaster that we are. We have had Neel's diagnosis now for a year and 4 months and I don't think that any one understands what I go through on a daily basis. I take care of all medical needs for both of my children and at times it can be really tough. You are obviously further down the time line path and I wonder how it is that the rest of your family has adapted to your son's emotional and physical needs. Keep in touch maybe we can talk sometime.
Thank you for reaching out. I agree that this site has been very helpful. Especially on days that all is overwhelming. How is Arun doing? My son is 3 and I have a daughter who is 10. I'm glad you found me on here. Keep in touch!
We order through www.mastersmarketing.com. You need to have a "prescription" from your son's doctor and possibly a customs letter as well. In particular, I've communicated directly with Julie Emms at masterksmarketing. I believe she gave me the original quote on the deflazacort. Here's her email address: firstname.lastname@example.org
this is definitely the cheapest route i have found so far. Good Luck. Donna
I am happy to hear you and your son would like to participate! Please let me know what you need from me. I am pleased to say several mothers from this site have responded. Thanks for your support! Donna 630-341-3839. I can answer your questions.
I can send you the information and permssion forms if you like. OR you could call me for details.(630-341-3839) I have done both with families. Some prefer to set up a time to meet and have me explan everything then. What ever is best. You can vsit my web site. dgcounselngnc.com It tells a little about my research. I amvery happy to hear your intrest! Hope to talk soon. Donna
Baljit knowing the exact deletion /mutation etc will be very important to know because that will help him in case he becomes a candidate for any research.so my suggestion will be to get a dna testing done asap.He is in the phase where they have lot of questions.I give prednisone 15mg daily to Aditya .and few of supplements like coq 10.centrum ,vit d3 .I will suggest you to start him on steroids that may boost his energy level and also may slow up the disease process a bit.May be get him back on feet for a little more.do dosing as per Dr ,and always go from the low dose and slowly increase if he can tolerate it.my e mail is email@example.com .give me u r number i will call you.
My son ADITYA turned 9 yesterday.he walks now but gets tired some days.he stopped climbing stairs and jumping etc etc.he walks with his posture .what is the gene status on Arun.Aditya has the deletion in 46-47 .My sons also c/o falls at school .some days more falls than usual but other days are ok.you know it is very uncertain,I am just praying for some drugs to come and help our sons.
I can send you the information of details of the research. I woiuld meet with you and your son. Asking him to draw a picture (what is is lke to be a boy with DMD) and then tell me a story about his picture. I have 4 questions that I ask the mother. I can come by you. We will need a quiet meeting place. Library, home, somewhere he will be comfortable and have privacy.