Many with Rare Diseases Know the Value of First Responders

Throughout my daughter Kelley’s 45-year life with a rare disease, there were numerous times that we needed to either call 911 or take her to the Emergency Department at a hospital due to the severe breathing problems she had that could come on quickly.  The First Responders we encountered always knew what to do as soon as they assessed the situation.

One of the times we needed help was after she had knee replacement surgery. She was able to get around the house on crutches, but her trachea had started to swell, making breathing difficult.  In spite of the usual nebulizer treatments, she was still in distress. We would have taken her to the local hospital, but there was so much snow and ice on the ground, it didn’t look possible for us to get her to the car. Our town’s First Responders were with the Fire Department. When we called 911, we soon had an ambulance, a fire truck and a few other vehicles at our home, as some of the responders were volunteers.

They started her on oxygen and decided to take her to the hospital. They let me ride in the front of the ambulance and I had to laugh the driver told me not to touch the siren button because it was the middle of the night and we didn’t want to wake anyone up. Small town. No traffic in the way.

After Kelley was settled at the hospital and getting the more advanced treatment than we could do at home, her breathing improved.  With her ever-present sense of humor on display, she said to me, “I just wish I could have been feeling better when all those nice young men came to visit.”

She always thanked them more than once for helping her.  Being very aware that the people who were helping her also had private lives, Kelley often said that she was sorry to bother them. She liked making connections with them other than about her medical condition. When she could, she asked them about what sports teams they supported, having learned that most First Responders had an interest in sports.  She sometimes went beyond that asking them how they made the choice to do a job that required so much training.

Kelley never wanted to take advantage of the system, so we didn’t call on them unless we thought it was really necessary. It always was. If you have ever dealt with breathing problems, you know that things can happen so quickly. They saved her more than once.

I’m sure I always said thank you at the time, but now I want to shout out a thank you to all First Responders on behalf of all of us who have needed you in the past or might need you in the future.

Whether your title is Fire Fighter, EMT, Police Officer, Paramedic or Emergency Department Nurse or Doctor, many of us admire you for being on the job at a critical time in our lives. You usually see us for a short time when we are at our lowest, and you accept that we are extremely stressed.

You have been willing to go through rigorous training while knowing you will have to face some horrific scenes and see people at their worst. Yet, you somehow manage to keep your cool and don’t take our remarks personally when emotions are high. You have always been very professional and courteous. You probably won’t know the outcome of our situation, but you are there for some of our most important moments and you make decisions that will affect us from that day forward. You have all earned my respect. I can never thank you enough.


Denise Crompton

Denise Crompton

 Denise Crompton and her husband, Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.

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