Table 1.

Participant characteristics

Characteristic	N	%
Child’s diagnosis
Spinal muscular atrophy (SMA)	11	73.3
Metachromatic leukodystrophy (MLD)	4	26.7
Relationship to patient (child)
Mother	14	93.3
Father	1	6.7

	Mean (SD)	Minimum–maximum
Parent age	39 (9.26)	31–67 years old
Child age	6 (5.62)	6 months to 21 years old
Time to diagnosis (months)	13.53 (14.3)	0 (Prior to birth)- 48

	N	%
Region
South (Maryland, Virginia, Tennessee, Texas)	6	40.0
North (New York, Massachusetts)	3	20.0
Mid-West (Illinois, Michigan, Minnesota)	5	33.3
West (California)	1	6.7
Insurance type
Employer sponsored	15	100.0
Medicaid	6	40.0
Medicare	1	6.7
Children’s health insurance plan	2	13.3
Medical assistance program (state or county)	2	13.3
Education
High school diploma	1	6.7
College degree	8	53.3
Graduate degree	6	40.0
Currently employed
Yes	11	73.3
No	4	36.7