Like every other disease, it is about the money.
No money, few specialists
No money, few medications
No money, little research
No money, little support from society
vitamins and supplements
medically necessary equipment
co-pays and deductibles
It is about the money.
The more medically complex, the greater the costs.
Or on the other hand you can be on the mild spectrum, and diagnostics to hunt an elusive diagnosis over the span of many years can be just as expensive.
Did I mention having to travel? We travel for a few Specialists. Airfare, hotels... yep, takes money too.
Realistically, as parents it is just expensive to have a child these days. Be it a talented gymnast or a child with a rare disease, raising kids in America is costly.
With a healthy kid you can forecast your budget. You can save based on generalities. We have an idea of the approximate costs with a healthy child. With a sick kid? Well, you have no idea. You have to manage to pay the medical bills and the regular bills and you must start saving. When you know your child will likely be sickly for the rest of their lives, you have to also consider putting money aside for when you are gone. For some this is impossible, for some this at best is very difficult. Very few in America have the resources to know when they are gone their child will be cared for.. the rest of us don't sleep worrying a dark,dirty, abusive adult care home paid for by the State is all that would be provided.
Money is the second biggest issue a Mito family deals with daily.
During Mito Awareness Week I usually grit my teeth. Part of the focus is hunting for the perfect package to sell the masses, to get the healthy ones to open their pocketbooks and write a check. Which family will portray the perfect portrait of the "story" that will break hearts and make folks dig deep in their pockets? Which patient has enough drama to catch the attention of the public? American's usually love the underdog, but these days it takes a lot more then a true need to get support. I don't like it, but I also understand it is simply how it is done now.. if you want donations you have to give them a reason to donate. So we search for those stories. We hunt to find that perfect patient wrapped in perfect wrapping to melt the hearts of American's and get them to crack open those checkbooks. Marketing, selling, putting lipstick on a pig- not my area of strength, I avoid it all usually. Though I admit, those abused, stray dog and cat commercials on Animal Planet where Sarah Maclachlan is singing? - well I will admit to muting the song, changing the channel, otherwise I am running for my wallet, wondering if I can run up to the SPCA and drop off food, or if I won the lottery, how much would I donate??? So I get it. I am a victim of great Marketing. It works. It is about the Money. It takes money to pay employees to run the UMDF. It takes money to entertain potential donors. It takes money to pay attorneys and accountants.. It takes money to make brochures and posters..all to make money to pay researchers.. then what about the patients who are unable to care for themselves? They need money too.
I hate that it is all about the money.. it reminds of when suddenly Thanksgiving hasn't even happened yet and every store is decked out in Christmas decor, hands out to donate for this cause or another... But I admit it is about the Money. I don't like the way the "system" is stacked ( Have I told you how I hate the Pink campaign??? I won't buy anything that is even the color of pink anymore), I don't like that we have to "sell" patients stories and spin them to manipulate the heartstrings- but grudgingly I admit we don't have much choice in these times.
So my thanks to those who understand this system, and are willing to dance to make it happen. Mito Awareness is about the Money.
Let us not forget though, money is only the second most important issue. At the end of the day, that money is for the patient.