The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#133: Rebecca Mulhall, Parent of Twins With SMA

·32 min·2 clips

Rebecca says the doctor told her, “babies usually don’t live past to see their second birthday.”

1. The Spinal Muscular Atrophy Podcast with Kevin Schaefer centers on Rebecca Mulhall’s family experience with twins who have SMA Type 1 and one child with Down syndrome. 2. Kevin Schaefer, who says he has SMA Type 2 and works as a columnist and forum director for SMA News Today, interviews Rebecca Mulhall, a single mother from Cleveland, Ohio. 3. The episode asks what parenting looks like when prenatal testing, NICU care, and SMA treatment decisions collide in one family. 4. Rebecca says her oldest child, Sean, is 4 and does not have SMA or Down syndrome. 5. She says her twins turned 1 on the 6th of next month, were born at 34 weeks, and weighed 4.9 pounds and 4.5 pounds. 6. Rebecca describes a prenatal test at about 12 weeks that flagged baby B for possible Down syndrome and gave her a 67% chance estimate. 7. She says the SMA diagnosis came after birth, while Antonio was still in the NICU and being monitored for a hole in his heart. 8. Rebecca recounts a doctor calling from the hospital and saying he did not want to explain SMA over the phone. 9. She says hearing that SMA Type 1 babies usually do not live past age 2 made her cry harder than she ever had before. 10. Rebecca says Cleveland Clinic downtown discussed Zolgensma, Evrysdi, and Spinraza before referring the family to Akron Children’s Hospital. 11. She says Akron Children’s had a specialist team and a social worker named Noel Buso, whom she describes as a second mom to the family. 12. Rebecca says the twins had a treatment window before their due date of November 17, because they were diagnosed on October 17. 13. She says in-home physical therapy through Cleveland DD early intervention and a therapist named Tricia made daily care easier. 14. Rebecca says Antonio has reached goals that doctors did not expect, including holding up his head. 15. She says Estella Rose is crawling and pulling herself up in the crib. 16. Rebecca says Tony from Genentech explained treatment in a normal conversation, even while her 4-year-old was running around the living room. 17. The interview stays practical and conversational, with Kevin asking about diagnosis timing, family support, sibling dynamics, and daily scheduling. 18. Rebecca’s tone is direct and reflective, and she repeatedly returns to the ideas of advocacy, “a village,” and not feeling alone. 19. Parents of children with SMA and Down syndrome will hear specific hospital, treatment, and support details. 20. Listeners looking for medical policy debate or abstract disability theory may skip it.

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