It has been a while ... I am curious to see how much has changed with you. My little guy is now 13 and struggles with fatigue the most. We put in a chair lift and Alex has an electric scooter when he has tired days. Lately he seems to be struggling especially when he gets a virus, it takes so much out of him. How are you and your family doing ? Are you involved in the PPMD community ? I would love to swap stories. Some days are so filled with fear and worry others are sunny. Just wanted to reach out, hope this email finds you well.
My name is Angie Jellinek and I have an 8 yr.old son with Becker MD. I spoke with you at the Orlando BMD conference. I am very new to the community and would like to keep in touch. We just found out that Alex has BMD this past July. I admire you and your husband for speaking to the group and thank you for sharing your story.