#MollysKids: Amelia Culp. No such thing as a ‘simple’ cold for some kids
CHARLOTTE, N.C. (WBTV) - In March we met Amelia Culp, from Albemarle, who lives with SMA Type 1. Stands for Spinal Muscular Atrophy. If not treated, it can be deadly. Most children diagnosed with this illness don’t live past the age of two. In March, she had a big infusion called a Zolgensma Infusion – it costs a whopping $2.2-million for a one-time dose.
Afterward, Amelia was in quarantine for three months. Her mom, Megan, says they started noticing improvements in everyday life.
“It was working,” Megan said. “Amelia began holding her hands up in the air and recently started rolling over before her first birthday. She never got sick in those first months following the infusion but in July, she did come down with a respiratory virus. I was able to treat her at home and we celebrated her first birthday. It was phenomenal.”
All was well until early September, when little Amelia got sick again. After a few days of trying to treat her at home and one doctor visit, Megan called EMS where they transported Amelia to Duke Children’s Hospital.
Amelia was hospitalized for four days for pneumonia, rhinovirus, and severe dehydration.
All of Amelia’s medical treatments are at Duke because a pediatric neurologist is there who specializes in this type of rare neuromuscular disorder.
“Then she seemed to be getting better and we were sent home again,” Megan said. “A few weeks later, I called to make an appointment for a pediatric surgery consult to move forward with getting her a feeding tube. It’s unheard of to have an SMA Type 1 12-month-old with no feeding tube, or recurrent hospitalizations, so I was feeling proud to have cared for her so long without those things.”
The surgery consult appointment was set for Oct. 6 at Duke.
“Amelia can snap and get sick very quickly,” Megan said. “On the morning of Oct. 6, we pulled into the Duke parking lot and I heard Amelia grunting. I got her out of the car seat, and she was blue, gasping for air. We ran her into the hospital where they called a rapid response.”
Within minutes Amelia’s room was filled with healthcare professionals.
“They rushed her to PICU, and Amelia was placed on a ventilator,” Megan said. “Her diagnosis was respiratory failure secondary to bronchiolitis, rhinovirus, and pneumonia. She spent 17 days on that ventilator. Many, many nights I sat there wondering if we would get to bring her home; all because of a simple ‘cold.’”
But as many families of immune-compromised children know, there is no such thing as a simple ‘cold.’”
As of today, Amelia is still hospitalized. Wednesday, Nov. 2, marks 27 days so far. Megan says it has been impossibly hard to be there day after day having no plan when they came in Oct. 6 to stay so long.
However, in some good news, Megan says, Amelia might be allowed to go home next week.
“Amelia is a strong warrior, but I want people to know how basic colds take such a huge toll on little ones with chronic conditions,” said her mom. “As we see the rise in flu and RSV cases, I beg you to please stay home if you or your child is sick. This is life or death for these kids. Amelia still has a long recovery but we will continue to push through and once we get home, WE WILL STAY AT HOME. I am sitting by her bed at Duke University as I write you this email, and say that with conviction.”
Megan said the staff has been great to them at Duke, even bringing Amelia a costume this past Monday.
“With the rise in sickness everywhere, it was on my heart to share this. Thank you for always giving updates to all of us on these amazing #MollysKids. My girl is my hero.”
No thanks necessary. Your words are true: RSV and flu and viruses are up everywhere. Children’s hospitals are at slammed capacities (as I mentioned last week in a long post about having to rush to an ER with my own 2-year-old.) If you’re sick, acknowledge it and be aware not everyone can get over “a simple cold” so easily.
Thank you, Megan, for this real-life update.
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