Mickie's Miracles Blog

Baby Alondra’s Infantile Spasms Story

Last year, through an unlikely connection, we were put in touch with Grissel and her baby girl Alondra.This is their story.

California native, baby Alondra was born on January 16, and had to have heart surgery when she was one day old. In and out of the NICU, Alondra’s doctors struggled to definitively diagnose her with any conditions. It was not until Alondra was being seen for a different issue, that another doctor mentioned to her mother Grissel that Alondra might be suffering from Infantile Spasms. At this point, Alondra had received many conflicting diagnoses, with no explanation as to what was causing her to suffer from multiple seizures daily.

Grissel says Alondra’s seizures were “…easily set off. She hit her head a lot, she had a lot of bruises.”

 It was after a discussion with Alondra’s occupational therapist, who just so happened to be the same occupational therapist that our very own Mickie saw as an infant, that Grissel learned about Mickie’s Miracles.

“Kristie told me everything that I needed to know in under one hour. She told me about CHOC, she told me about medication resistance, she told me everything.” 

Now on a journey to discover how to control Alondra’s seizures, she has undergone MRI’s, EGG monitoring, and more. Grissel told us, “Never in a million years did I expect to have such a medically complex child.”

With the advice from our team, Grissel was able to take her daughter Alondra to a Level 4 Epilepsy center to meet with the pediatric epileptologists at CHOC Children’s hospital. There, she is currently undergoing continued monitoring in the hopes of dialing in an appropriate care and management plan.

 Today, Alondra is “Happy, and very smiley. She never gives up, it’s so amazing to watch. It’s very hard as a parent when you can’t help your baby. When she has seizures, she turns to me and says, “help me,” they make her cry. But, we are taking it one day at a time.”

Grissel says she couldn’t do it without the support she has gotten from friends, family, and the people she has met through the Mickie’s Miracles community.

 If anything in baby Alondra’s story spoke to you, let us know down in the comments! We LOVE to hear from our readers. Do you have a story to tell? Contact us!

Mickie’s Miracles is a non-profit foundation for the education and awareness of pediatric epilepsy. We run on the donations and support of others, so if you have some time, please consider donating to your cause. Thank you.

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