This Celebrity’s Prison Sentence Would Feel Like a Vacation for Many Rare Disease Families

Recently, a well-paid celebrity, being afraid that her daughter wouldn’t be accepted by the college of her choice, paid a “fixer” to help the girl by cheating on the results of the SAT test. Once the celebrity was caught, she did admit to the crime and asked for the court’s mercy.

Thus, in addition to spending two weeks in federal prison, she was also given a $30,000 fine, one year of probation and 250 hours of community service for paying $15,000 to have her daughter’s SAT scores corrected.

When I heard about this, I thought about all of the families I know who are looking for help for those with rare diseases, and how much good that could be done with the total of $45,000, which is a pittance to someone who makes the kind of money that celebrity does.

While some people think that it might be difficult for her to spend those 2 weeks in prison, I’d rather see her spend those 2 weeks with a family in a critical care unit in a hospital, while they are praying their loved one will be able to be pulled through yet another crisis. She would spend the day at the side of the child, taking mini-breaks for nourishment, and spend the nights sleeping in recliner chairs in the adjacent lounge, so she could be available, should she be needed to give permission for a new treatment or for the patient to go back into surgery.

Then, she should go into the home of a family who is spending the last two weeks of a child’s life on hospice care so she could assist with all of the daily tasks they try to keep up with while knowing that the time with that child is something they will never have back.

For another two weeks, maybe she could help someone who has just received a devastating rare disease diagnosis while they try to navigate their way through the process of learning about that condition, making the rounds of various treatment centers and trying to understand and accept what that means for the entire family.

Anyone who has had to deal with such circumstances knows that it would take more than two weeks to deal with the process of filling out forms and fighting with insurance companies and bureaucracies.

And then she could spend another two weeks helping one of the rare disease groups prepare for and put on a conference and/or fundraiser to find funding for research into an ultra-rare disease. And if she had spare time, she could read the remarks on the Facebook pages populated by families trying to navigate through all of the aspects of those diseases and asking each other for suggestions and prayers.

As to the money she spent, many families could use some of that to pay for the travel and parking expenses that will eventually break the bank for them. In fact, traveling with families who have to take along more equipment than most people even know exist could be an eye-opening experience.  Some money could be used to defray what the insurance won’t cover; some could be used to help a family attend a conference where they could learn more from the experts as well as interact with others on their same path.

Since this particular celebrity is only the first one being sentenced, I wish I could be the judge that would pronounce the sentence for the next one. I would first declare that two weeks in a federal prison would feel like a vacation for many weary rare disease families.

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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