Updated: June 30, 2025
Enjoys life with her two sisters, one of whom is Sofia.
Born: May 2019
First symptoms: 2-1/2 years old
- Fell regularly without any apparent reason
- Difficulty in getting up again
- Several hospitalizations and tests to find out what she had
At age 3 she received her diagnosis: SMA-PME.
Age 3:
- Beginning of epilepsy
- Can’t get up
- Walks with a walker
- Often chokes on her food
- Operation for a feeding tube
Age 4:
- Very difficult epilepsy
- The circus of trying many different medications begins
Age 5:
- Illness is stable
- Often hospitalized with pneumonia
- Family made a decision to bring Megan home from the hospital for palliative care
- Doctors and nurses come see Megan at home! A true blessing!
Age 6:
- Disease is stable
- Epilepsy is controlled by medication for now
- Quite well in spite of some occasional viruses
SMA-PME Research 