My name is Jessica, and I’m the mother of two amazing girls, an eight year old and my youngest, Madelynn, who is five. Madelynn is a true warrior. She has a bravery far beyond her years and the purest love for rollercoasters, Disney, and stuffed animals. As a family, we love spending time together, swimming, skiing, and playing board games. But behind our happiness is a daily battle that quietly shapes our lives.
Madelynn was born with Tuberous Sclerosis Complex (TSC), a rare disease that causes benign tumors to grow in her brain, heart, kidneys, face, and eyes. We didn’t receive her formal diagnosis until she was 15 months old. Shortly after, her EEG showed sharp waves, an early warning sign that seizures were likely. Madelynn had her first seizure at age two. It was so severe that she had to be medevacked to the hospital. I remember every second of those 12 minutes, 12 minutes where we didn’t know if she would wake up. It was the worst day of my life.
Since then, Madelynn has been on two anticonvulsion medications, including one we receive from PANTHERx, and she has been seizurefree for three and a half years. But missing even one dose could trigger another medical emergency. Status epilepticus, when a seizure lasts longer than five minutes or when seizures happen back-to-back it can be life threatening. There is nothing more terrifying than not knowing if your child will be okay.
That fear became very real during a recent fun family ski trip.
Madelynn takes six medications every day. Packing for travel is a meticulous process, syringes, pills, liquids, powders, and always her rescue medication. Despite double and triple checking, one of her medications was left at home on the kitchen counter. And of course, it was the one medication we can only get from PANTHERx. I didn’t discover the mistake until Friday night when I went to give her evening dose.
Upon discovering the missing medication, I knew immediately that we would have to end our trip and drive home, there was no way I could risk her missing that dose.
Out of desperation, I called PANTHERx in a panic, barely able to speak through my tears. The woman on the phone was incredibly kind. She told me she would do everything in her power to help.
We tried every possible option. Overnight delivery wasn’t possible—FedEx had stopped taking shipments. A friend back home couldn’t ship it because the FedEx location wouldn’t accept medication. And with FedEx closed on Sundays, nothing could get out the next day. PANTHERx even called local hospitals for alternatives.
Then, when I was running out of hope, I got a call back.
They told me they had secured a courier who would drive six hours through the snow to deliver the medication directly to us.
I cried. I couldn’t believe they were willing to do that for my family. I even offered to pay, but they told me they were simply happy to help a mom in need. That courier drove for hours on a weekend, in the snow to make sure my child didn’t miss a dose.
As a mom of a child with complex medical needs, I live with constant worry. You never sleep the same way. But in that moment when I was scared, PANTHERx stepped in without hesitation. They’ve always been incredible. When Madelynn first needed medication and insurance hadn’t approved it yet, they sent it at no cost because she needed it immediately.
If I could say anything to the team that helped us that weekend, it would be this: Thank you for helping me when you didn’t have to. Your kindness was above and beyond, and I will never forget it.
To other families, I want you to know that there truly are good people in the world. I’m so grateful I made that phone call. I only wish I could get all of my daughter’s medications from PANTHERx.
They didn’t just deliver medicine. They delivered peace of mind when I needed it most!
https://pantherxrare.com/rarestories/a-vacation-saved/
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