37 min
Trust Your Instincts; An Early Intervention Can Save Your Life Once Upon A Gene
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- Personal Journals
ONCE UPON A GENE - EPISODE 030
Trust Your Instincts; An Early Intervention Can Save Your Life
Anjela Yumel lived through a natural disaster, relocated to the US from the Philippines, was without her mother for a year, took on the responsibility of caring for her siblings, became a single mom, had a medically complex child Jaela, who was born with Hurler Syndrome. She's amazing and I'm honored to share this story with you.
EPISODE HIGHLIGHTS
Tell us about yourself and your daughter.
How did you get the bone marrow donor match?
Was there any type of isolation you had to do before, during or after the bone marrow transplant?
What do the fusions entail? Does she have to have them every week for the rest of her life?
How has this experience affected your daughter developmentally?
Will your daughter have to have another bone marrow transplant at some point in her life?
Share how you've changed your career to give back.
What would you say to the parents of complex kids who can't create the bandwidth to think about the part of the future of caring for our kids when we're gone?
LINKS AND RESOURCES MENTIONED
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/
National MPS Society
https://mpssociety.org/
Jaela ’s CaringBridge Journal
https://www.caringbridge.org/visit/babyjaela/journal
TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
Apple Podcasts
Stitcher
Overcast
CONNECT WITH EFFIE PARKS
Website
Twitter
Instagram
Built Ford Tough Facebook Group
ONCE UPON A GENE - EPISODE 030
Trust Your Instincts; An Early Intervention Can Save Your Life
Anjela Yumel lived through a natural disaster, relocated to the US from the Philippines, was without her mother for a year, took on the responsibility of caring for her siblings, became a single mom, had a medically complex child Jaela, who was born with Hurler Syndrome. She's amazing and I'm honored to share this story with you.
EPISODE HIGHLIGHTS
Tell us about yourself and your daughter.
How did you get the bone marrow donor match?
Was there any type of isolation you had to do before, during or after the bone marrow transplant?
What do the fusions entail? Does she have to have them every week for the rest of her life?
How has this experience affected your daughter developmentally?
Will your daughter have to have another bone marrow transplant at some point in her life?
Share how you've changed your career to give back.
What would you say to the parents of complex kids who can't create the bandwidth to think about the part of the future of caring for our kids when we're gone?
LINKS AND RESOURCES MENTIONED
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/
National MPS Society
https://mpssociety.org/
Jaela ’s CaringBridge Journal
https://www.caringbridge.org/visit/babyjaela/journal
TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
Apple Podcasts
Stitcher
Overcast
CONNECT WITH EFFIE PARKS
Website
Twitter
Instagram
Built Ford Tough Facebook Group
37 min