Parenting Impossible – The Special Needs Survival Podcast

Episode 100: A Roundtable Discussion Between Mothers of Children with Rare Diseases


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This week, we are celebrating the 100th episode of our "Parenting Impossible" podcast!

To kick off this special episode, we listen to a song by Craig Pomranz called "Different," which he wrote to inspire children and adults everywhere to celebrate their differences rather than try to hide them.

After the song, Annette dives into her discussion with 3 incredible guests — Joslynn Jones McLaughlin, Laura Weisgarber, and Megan Fabrizi — as they share their stories of raising children with a rare disease called Spinal Muscular Atrophy (SMA).

Annette is familiar with the complex emotions and challenges of raising a child with a rare disease, as her oldest daughter, Elizabeth, passed away from Mitochondrial Disease in 2013.

These moms share their stories of receiving their childrens' diagnoses, grieving their own dreams and expectations, working through mom-guilt, battling mental health issues, celebrating the "small" victories, trying different treatments, and learning how to navigate life during COVID-19.

At the end of the episode, Joslynn, Laura, and Megan each share words of wisdom that they have found to be true along their own journeys, as well as the importance of sharing stories with other members of the disability and rare disease communities.

Find more information about the SMA treatments referenced in this podcast here:

  • Spinraza
  • Evrysdi
  • Zolgensma

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

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Parenting Impossible – The Special Needs Survival PodcastBy Annette Hines

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