Ella has had several surgeries in the past seven years since her diagnosis of spinal muscular atrophy (SMA). Her first was for the placement of her G-tube. This device allows us to supplement Ella’s diet and administer her medications easily. Her second surgery was on her hips to help to improve her sitting balance and exercise her legs.
During her latest operation, surgeons placed metal rods in her back to help with her scoliosis. They used “magic rods” that can be lengthened magnetically by her orthopedic surgeon every three months. She has come through all of her surgeries with exceptional bravery and a positive attitude.
Recently one of her SMA friends had back surgery. Days beforehand Ella spoke with her pal using FaceTime about the procedure, telling her what to expect and how to deal with the resulting pain and discomfort. She talked about what the surgery would entail and the benefits her friend would gain.
When the day of the surgery arrived, Ella was nervous for her friend. She kept close to her iPad waiting to receive news. Finally, early in the evening, her friend called. The girls video chatted for a short while and Ella complimented her friend on her appearance and gave her words of encouragement.
It is wonderful to see Ella communicate with her friend who faces the same challenges Ella does. The girls share experiences to which others without SMA can’t relate. They giggle, share triumphs and letdowns, and support each other through difficult times.
The girls live about an hour’s drive apart from each other. We are planning a get-together once her friend has recovered from her surgery. The girls are also both signed up for the Muscular Dystrophy Association’s MDA Summer Camp and plan to share a bunkhouse. They often reminisce about the fun they had at last year’s camp.
Ella communicates with a variety of people: school classmates, caregivers, siblings, extended family, and parents. But the relationship she has with her FaceTime buddy goes beyond those she shares with others. Their friendship enters the realm of empathy as they relate to each other’s experiences with SMA.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.