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Jul 1, 2020 Latest post:
Aug 25, 2020
❤️Bryan Boys💙 We are very sad to share that Sawyer and Wesley have been diagnosed with Duchenne Muscular Dystrophy (DMD).
After observing some muscle weakness in Sawyer last fall we started physical therapy. PT eventually led to more testing. By December we received the unexpected diagnosis of DMD. Siblings are tested as a precaution and in February we shockingly found out that Wesley too has the same condition even though he shows no obvious symptoms. Now that we are over the initial shock, devastation and grief we are trying to get a plan in place for their care. We have been going to many appointments and the boys have had countless exams and tests done already.
DMD is a devastating and rare muscle wasting disease in children. Over time, children with Duchenne will develop problems walking and breathing, and eventually the muscles that help them breathe and their hearts to beat will stop working. Duchenne is an irreversible, progressive disease. Mobility is shortened. Life expectancy is decreased dramatically. There is currently no cure for Duchenne. Steroids is the common treatment to slow the disease down. Thankfully many trials for gene therapy are underway and a cure is on the horizon.
We are learning that this is such a complex condition, and many people have so many questions, that we felt it best and easiest to use Caring Bridge to keep family and friends informed and updated in one place. We welcome and appreciate your prayers, support and words of hope & encouragement through our journey.