After Lilli was born, it took 21 months of medical confusion and speculation for doctors to conclude Lilli had Smith-Magenis Syndrome (SMS), a developmental disorder that affects the 17th chromosome. SMS causes intellectual disability, delayed development, sleep disturbance, and extreme behavioral problems. At the time, Brandi was told that SMS was so rare, only 600 people worldwide had the disorder. There are very few support groups for SMS, none at all in Canada. The details of SMS are rather hellish.
Lilli was born with a heart defect that affects roughly 25% of kids with SMS. She wouldn’t learn to walk or talk like the other kids. In fact, at 6 months old Lilli still resembled a newborn.
What can we do to help? What sort of treatment options are there? Are there any specialists in such a rare disease?
Prayers go out to little Lilli and her family.