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Grandparents are supposed to have an easier time of things. They’ve done their time as primary caregivers of their own children, and now they get to hold their lovely grandchild (or grandchildren), spoil them, and send them home with their parents. No more sleepless nights, and no more worries.

Add a diagnosis of Duchenne muscular dystrophy, however, and everything changes; now there are worries as well. You still hold this lovely boy, but perhaps a bit tighter.

It is a very difficult position. Your own child needs your support, but not so much as to feel overbearing. Decisions about what to do are not yours to make. You may find it difficult to talk about what you see or feel because of the delicate balance of emotions, knowledge, and hope between grandparent, parents, and grandchildren.

Grandparents have a unique and challenging role to play in the life of a family facing Duchenne. It is once again a teaching role, where your guidance, your support, and your open arms will instill hope and confidence in your own family and so many others.

Connect with other families who are looking to find comfort and support among families who share this unique experience, or see the latest research toward a cure at our Advance Research section.

We also recommend that you read two extremely insightful articles, Mastering Balance Beams and When Jack Fell Down...Jill Came Tumbling After, by nurse and mother, Joan Fleitas Ed.D., R.N., about the balancing act parents face with each other and in trying to hold their family together.

Related links

Article: Mastering Balance Beams
Article: When Jack Fell Down...Jill Came Tumbling After
Article: Facilitating family adjustment to a diagnosis of Duchenne
Read stories from parents of boys with Duchenne
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There has never been so much momentum in the Duchenne community. Help us keep moving forward by donating to fund CRISPR/Cas9 gene‑editing technology. Every gift to PPMD is being doubled until we raise $250,000—but we have to reach this goal by 12/31!