Hi Joyce I'm Melissa's mother and Brogan's grandmother. We live right around the corner from you. I tried sending something weeks ago after getting a message from your daughter but my daughter just informed me how bad I am at this and the message didn't go through..........she is watching me type this one so I think it might actually get to you. I don't get to spend too much time on the site but I try to check it when I can. I'm sorry you all have had to join with us and the rest of the families who have a precious loved one with this diagnosis. Just wanted to introduce myself..........and will try to send more later.
Yes, he lives in Arabi too. The majority of our family lives in the parish. My mother and father and I live in Old Arabi and my brother and sister-in-law and the boys live in the part of Arabi around Patricia Park.
Ok, I just read your message in our group. It seems that your daughter is getting good care for Wil. I have not heard much about that Dr., as you will see, most of us here go to Cincinnati Children's Hospital to see Dr. Wong. We go for our first appointment in November, but I have heard that she is the best of the best when it comes to Duchenne. Just wanted to let you know in case your daughter ever wants a second opinion.
I am very familiar with Bergeron as well! That's what caught my attention...we have plenty Bergerons here. If you are interested we have a group for Louisiana and Mississippi families you should join too. The family on this board from Arabi is Michelle LB and her mother-in-law Mary Lynn Burns. (You can enter their names in the search box to the right and it should lead you to their pages.) We have other families from LA...Marla and Vaughn Tabor (that's my parents, well, my mom) Kimberly Damron (she is from Geismer, outside of Gonzales), Jessica who is from Hahnville, Lori Ware (and her hubby Joe) from West Monroe, and Christy Crochet.
I am sorry to hear that Wil's diagnosis was changed. It does seem that his later diagnosis would indicate BMD? But I am learning that each boy progresses differently and often the lines are blurred between BMD and DMD at this young age. I am hoping to get all of us from LA together one weekend. I will certainly let you know...it would be wonderful to meet you!
Hi Joyce! I am from Labadieville LA which is in Assumption parish..outside of Thibodaux and Houma. We have a mom on here from Arabi and her mother-in-law. Just wondering if ya'll met yet? When was Will diagnosed? You'll find GREAT support here. There is a grandparents group (my mom is also on the board) if you are interested. Leave me a message anytime!
Welcome Joyce! Where is Jensen Beach FL? I am in St. Augustine - haven't seen too many people on PPMD from Florida. I think it's great that you are support your daughter and grandson! I know it means a lot to them.