"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with...
Meredith Howell’s Story – a daughter with a rare genetic condition (BBSOAS)
Podcast Show Notes
Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) shortly after she was three-years-old. However, their story didn’t begin there.
As an adventure, Meredith talks about how she and her husband moved to Costa Rica from Indiana after they were married. Lola was born there and shortly after birth, her mom began having questions about her health and development. From infantile spasms to possible lissencephaly (smoothing of the brain), they searched for answers and were eventually led to the NR2F1 gene mutation which explained many of Lola’s symptoms.
Meredith gets real in our conversation about the ups and downs associated with having a child who is legally blind and has developmental delays. She talks about her own struggles and how she finds balance being a working mom.
If you would like to connect with Meredith, you can send her an email or find her on Instagram and Facebook at Say Hola Lola.
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