Siblings: The Unsung Heroes of Rare Disease Families

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If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything is running smoothly are the siblings of those who have rare diseases, or the siblings of their parents. This doesn’t happen only at conferences, but at any gathering that includes rare disease families, as well as in everyday life.

Truth is, that when a member of the family has a rare disease, everyone in the family is affected by that condition, even if they don’t realize it.

I recall being at a conference a few years ago when I mentioned something about “our disease” to one of the siblings. She quickly responded, “I’m not affected,” the word affected being the one that is often used to distinguish the person who actually has the rare condition. But I pointed out to her that she is indeed also affected, even if not physically, because it is a family issue.

She humbly saw herself as simply being a helper, when in fact she is one of the many people without whom the roads that rare disease families travel would be so much more difficult.

Parents usually try very hard to make sure none of  their children are short-changed when they must spend so much time as well as family finances on one particular child. They worry about the emotional health of all of their children and can feel guilty if they need to be at the hospital with one child when another is preforming in a recital, or playing in a ballgame.

They tend to wonder if the siblings are feeling neglected because of the attention given to the child who needs special equipment, treatments, operations, visits to clinics, and more.

When my children were young, and my oldest daughter had appointments with one of her specialists in Boston, it was sometimes necessary for me to take one or more of them along. I usually tried to fit in side trips for fun when we did that, so those visits wouldn’t be so taxing on all of us.

However, I didn’t realize that one of my children associated those trips to Boston only with hospital visits, until one of her friends told her that their family was going to Boston, and my daughter responded, “Oh, what’s wrong?”

Actually, nothing was wrong. That particular family was going on a shopping trip, but despite our side trips, my daughter still associated a visit to Boston as being a visit to one of the hospitals there.

I’ve observed the way in which some siblings watch out for that brother or sister who has special needs.

They often are the most understanding of others in the community at large. As adults, many of them go into helping professions, because they have developed a deep compassion from having lived with a loved one who has limitations due to a rare condition.

There are siblings who give up a lot in order to be there for their family members. They hold fundraisers, man the child care rooms at conferences, and take the children on excursions while the parents are conferring with the experts.  They also give up the innocence of youth, when they must deal with loss of a loved one that often comes about at a young age.

I’ve never seen any of these heroes ask for any attention or rewards for their labors. It is clear that they are the unsung heroes of rare disease families. They deserve our admiration!

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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