All mothers and fathers want to protect their children, but a Duchenne diagnosis can leave you feeling helpless and isolated. The most important thing for you to remember when facing the challenges of Duchenne is that you are not alone.
Your family, your friends, your physicians, and your PPMD family are always available to help you navigate through what can seem like an overwhelming journey — a journey you never planned or wanted to take.
"As parents, we all believe that we should be able to protect our children from harm, socialize them to be exemplary citizens, ensure their perfect health, and craft for them lives where they will surely live 'happily ever after'. It is as if we perch ourselves on parental thrones when we give them birth. We learn eventually that we are not endowed with such power. When children are diagnosed with muscular dystrophy of any kind, we are given a crash course in humility."
The passage above is an excerpt from Mastering Balance Beams: Parenting Children with Muscular Dystrophy, an incredibly helpful essay written by Joan Fleitas Ed.D., R.N., a mother who deals with her own parenting challenges, and who helps families face the issues you and your family are facing now.
Keep in Mind
- There are many professional counselors and other therapy options available to help families cope with the demands and challenges that accompany the diagnosis of Duchenne.
- Anger, guilt, fear, and sadness are common feelings associated with the diagnosis of Duchenne.
- The course of coping is an ongoing process, filled with both good days and bad.
- Asking for help or advice should not be considered a weakness or failure; it's a positive and constructive action that can help everyone in the family deal with the issues at hand.
PPMD has created a networking site to bring the community together like never before. Please visit our Connect page to connect with other families who are looking to find comfort and support among families who share this unique experience.
You don’t have to feel alone.
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Read Parent Stories
Article: Mastering Balance Beams: Parenting Children with Muscular Dystrophy
Article: Facilitating family adjustment to a diagnosis of Duchenne
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