To provide all the care needed for Semmi to continue to improve or at least maintain his condition puts a financial strain on the family. Some of the treatments are simply not within reach, even though they are strongly recommended for him by multiple doctors and professionals. For example, two weeks of intensive therapy is recommended 4 times a year.
We came to a conclusion not to undergo rhizotomy surgery as there are risks involved and there is no assurance of improving his quality of life. However, the last evaluation and checkup at Shriners Hospital revealed a potentially progressive misalignment of his hips requiring surgery in the next 6-12 months. Also, his posture and back muscles need continuous work. Most of the treatments require extensive travel and time off work, sometimes weeks. Semmi is smart and very socially inclined; he yearns for his peers’ company, but his disability stands in the way.
After several weeks of disruption in the therapy process due to financial struggles, we could see a sharp decline in his abilities as his body elasticity deteriorated, resulting in pain, cramps, disrupted sleep, frustration, and sadness.
If we can provide Semmi with at least most of the recommended treatments, he may be able to avoid potential surgeries and worsening of his condition. This could help him advance in his ability to become a self-sufficient member of society. It’s a lifestyle of hard work and ongoing exercise for him; he just needs a lot of help, especially during his growing and developing years.