Doing Battle on Behalf of a Rare Disease Child

When others learn that you are the parent of a child with a rare disease, they most likely correctly assume that doctor appointments and hospitals might be involved. Yet few understand how much of your time is spent doing battle in order to get that child the help that they rightly deserve. While all parents have conflicts with others in regards to their children now and again, parents of children with numerous physical or mental problems must frequently interact with many of the bureaucracies that occur in places like hospitals, insurance agencies, and school systems.

Our daughter, Kelley, was three years old when the symptoms of her rare condition started to show up. For many years we didn’t know what was causing her problems, so we started on the same familiar path other parents have been on, going from doctor to doctor looking for help. From the earliest days until we finally were able to get a diagnosis, when Kelley was ten years old, we ran into many situations that called for this Momma Bear to do battle.

Her condition was often misunderstood by the people who made the rules for the systems that we encountered.

After we started to meet up with other families and hear their stories, I learned how similar our experiences were to those of others, across the board and around the world. I’ve heard many stories similar to ours, where parents were reluctant to do battle, but felt compelled to do so. I’ve heard their frustrations with the lack of understanding from those who have wanted people to fit into categories and behave in expected ways. Few parents are able to handle those difficult situations easily; most find it very upsetting to go against their own grain, where they would just as soon wish for everything to go along smoothly. I know that I found some of those encounters to be exhausting. Anyone would prefer to spend time reading a book to their child over spending hours on the phone trying to obtain some satisfaction from one bureaucracy or another.

When I first heard the song, “You and Me Against the World” [by Helen Reddy] I thought it was written for us, even though the composer had no idea who we were or what we were going through. From then on, whenever I had to do battle that title would come back to me.

Also, by the time I heard that song, we knew that Kelley had an ultra-rare disease that would most likely end her life prematurely, so these lyrics really hit home:

“And when one of us is gone,

And one of us is left to carry on,

Then remembering will have to do,

Our memories alone will get us through.

Think about the days of me and you,

You and me against the world.”

As it turned out, Kelley lived much longer than we expected her to, thanks to all of the good help we received. We spent so much time together through those years, certainly much more time than most parents spend with any of their children. I feel fortunate to have so many more memories than I ever expected to, even though some of those memories included doing battle on her behalf.

The sweet memories remain with me, and I hope that other parents will be able to have many sweet memories even though the battles may be inevitable.

About the Author: 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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