A False Alarm Reminded Me of the Importance of Having a Fire Plan

Emergency preparedness is especially critical for Duchenne MD families

Betty Vertin avatar

by Betty Vertin |

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Bleep. Bleep. Fire. Fire. Bleep. Bleep.

It was 3 a.m., and my eyes flashed open as I bolted out of bed. The fire alarm was going off. Before I had left the bedroom, my 8-year-old daughter, Mary, was flying up the stairs from her basement bedroom, frantic and in tears.

My husband, Jason, caught her and consoled her. He told her it was probably a false alarm, but to stay with us while we checked the house for fire. We ran from to room and looked outside and in the garage. As we suspected, there was no sign of fire. The alarm went off as suddenly as it had started.

Our fire alarms are hard-wired, so when the battery in one gets low, they all go off. But it was an unfortunate coincidence that the alarms went off so early in the morning following a windy day here in drought-stricken Nebraska.

Due to the drought and wind, there were several wildfires in the rural areas surrounding our part of the state, so we panicked for a minute when the alarms went off.

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The experience made for an eventful night, but it also made me wonder what we would do if there were a real fire. Although we discussed our fire plan a few years ago as part of a school assignment during Fire Prevention Month, much has changed since then. For instance, my sons Max and Rowen now use power chairs for significant amounts of time. Rowen wouldn’t be able to leave the house without his.

House fires are horrible and inconceivable for anyone, but there are more considerations involved when children have special medical needs.

As I lay in bed that night wondering what we’d do in the event of a real fire, my first thought was getting the kids out safely. That would be the priority.

The two kids in the basement do not have Duchenne muscular dystrophy and could get out of the egress window. The older one would help the younger one if they couldn’t make it up the stairs.

Max, Rowen, and Charlie, my sons with Duchenne, are all upstairs. Two share a room, and the other is just across the hall. As long as we could get to them, we could get them out the window. Max and Charlie can walk enough that they could escape the house if we got them outside.

But what about Rowen? How would we lower him to the ground without him falling? Would we have enough adrenaline to lift and hold him?

My prayer is that we never have a fire, ever. But if we do, I pray it’s located somewhere that wouldn’t prevent us from putting the boys in their chairs and having them drive out the front or back door, whichever were safest.

Secondly, if we could get everyone out safely, what else should we take? I know officials say not to worry about things, only people, but if we had time, I’d make sure we could get the boys’ chairs. Their power chairs are their legs, custom-made for them. I can’t imagine leaving them in the house to face damage. It’s not like we could go out the next day and pick up a new one.

Then I thought about their medications. I’d have to grab the boys’ pillboxes. We can’t just pick up specialty medicines at the pharmacy, and the boys can’t go without treatment.

They are also in a clinical trial. We receive three-month supplies of the experimental medicine for each boy, which we keep in the basement. Would I dare run downstairs to grab it?

My thoughts started to really unravel at this point as I considered our ceiling lift system. I know I couldn’t detach the track from the ceiling, but what about lift portion? Should I detach it and bring it with us?

Medical equipment is so expensive. Of course, my first priority would be the boys, but if I could safely get the other things out, shouldn’t I try?

I don’t know the answer to that question. But I know I need to talk with other Duchenne parents and find out what their plans are.

I know I’ll locate the perfect lift for the boys. Perhaps I should talk with the fire department. I might also need to start storing the clinical trial medicine upstairs.

Jason and I need to sit down and talk it all out. Decide where we’d go if we got the chairs out and needed somewhere accessible to stay. And I think we need to practice our fire plan, too. I really wouldn’t want to be figuring this out in a stressful, time-constrained moment when our lives might be at risk.

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


R. Schifiliti avatar

R. Schifiliti

Practice your drill and keep track of the time. This will help you understand just how much time you need. It is a race: Available Safe Egress Time (ASET) vs Required Safe Egress Time (RSET). Today’s furnishings, coupled with tight, energy efficient homes means that fires grow very quickly compared to a few decades ago. If you experience a fire that transitions to flames quickly, you will probably NOT have time to assist more than one person. More smoke detectors or smoke alarms would reduce fire detection time somewhat. If you can somehow afford it (or get some grants, charity, etc.) a residential fire sprinkler system will control and contain a fire allowing for a much larger ASET. This might be the kind of community project that your local fire department, building department, sprinkler industry, alarm industry can help with.

Betty Vertin avatar

Betty Vertin

Thank you so much for sharing your knowledge. You made a great point about practicing and I had not thought of a sprinkler system. This was very helpful.


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