Summers noticed little improvements to her upper overall body power and mobility in excess of the future year, but was grateful when a less invasive treatment method was accredited. Last February, she began using the oral medicine Evrysdi. Whilst it leaves an unpleasant style in the mouth, Summers considerably prefers it to lumbar punctures.
Whilst Summers, who has a caregiver, just cannot prepare dinner or get dressed on her personal as her arms come to be also weary, she was delighted to graduate to a 16-ounce bottle numerous months ago. At Easter, her aunt gifted her a 32 oz drinking water bottle which, to Summers’ delight, she is able to maintain by a loop all through filling and convey to her mouth to drink.
“It’s minimal things like that — the improved endurance. And restorative rest, where by you go to mattress and all the points that manufactured you tired in the course of the day get reset and you get a total other working day, and that is magical,” Summers says.
Summers will possible only experience slight improvements with continued use of the medication, she suggests, but is optimistic and grateful to have participated in research at Mayo Clinic Rochester, the results of which will with any luck , aid long run patients with spinal muscular atrophy.
Summers finds joy in the modest items, like crafting with family members, and credits her faith, which she rediscovered 7 years back, with her optimism.
“I wasn’t always this man or woman — I was pretty unfortunate, I was really dim. I was not outgoing,” Summers claims. “I rededicated my lifetime to Christ — that transformed my lifetime.”