It is a hard spot for those affected by Mito. It is something that we ALL struggle with but rarely speak about with others outside the community, heck we even carefully skirt around it with each other.
Loss of work, modified transportation, copays, doctors and meds not covered by insurance, insurance copays, travel expenses to get to experts, modified homes, modified equipment, medical supplies that we so badly need but insurance doesn't supply enough of, medical equipment not always covered, special clothing, food while we are inpatient for weeks and months, child care for our other children while we are inpatient, gas to drive back and forth to so many appts and therapies each week, toys for therapy, special school costs, adaptive equipment for communication and therapy, therapy centers, nursing, special aides, special needs car seats, counseling and therapy for everyone involved, enormous utility costs to run all of the special equipment and to keep the house at the perfect temp for those that can't on their own. Oh and lets not forget doing everything we can to keep their lives happy and healthy and perfect and help them live out their bucket list, and make every birthday and holiday and Christmas as VERY special as possible because it very well could be their last.
The above list is only a FEW of the "hidden" costs. There are so many more. I am simply listing some of the first things that come to mind for our family.
Let's not forget the above costs are while they are still alive.
Many of us end up with funeral expenses, which are ENORMOUS. Plot, coffin, vaults, flowers, memorial folders, food, guest lodging, burial, headstones, etc.
Most of us weren't even able to get insurance policies as our little one's were to sick to qualify, and if we are it's usually thru an employer and children policies are very small and minimal.
The final costs come quickly and abruptly. Most families are still left with bills from hospice, hospital stays, PICU stays, doctors and anything and everything in between.
Now think about the adult caregivers. Many of us have let our health slide as we simply don't have the time, energy or money left to properly care for ourselves. We have our docs, meds, therapies. The stress and lack of sleep have taken a huge toll. There are mounting medical costs for us many times as we have given our life over to caring for our "Mito patient".
We also fundraise, we step up to help families in need. We donate our money, our time and our talents. We hold auctions to help families in need and families who have lost. We donate to Mito charities, we set up fundraisers, we do so much behind the scenes to help raise money so that they can possible find cures and treatments for Mito, so that it can spare our loved one, or others still fighting.
We give and give and give of ourselves financially. They take and take and take from us financially. So many of us are doing the best we can to get thru each month with our bills paid, food on our tables, and meds and treatments for our loved ones.
If we come online and speak of financially problems, asking for help with fundraisers, ask for donations to get to a specialist or for a life saving piece of medical equipment, or for a donation to a local walk or event, we are usually met with silence from most of the outside world. The mito community steps up, they scrape from already empty accounts, they stay up all hrs to make crafts to donate, they do what it takes to get the money needed. They give and give and give until they have nothing left.
This isn't a post begging for money, this is a post begging for people to think and consider and realize the financial toll that Mito and I'm sure so many other serious medical conditions take on families. Please consider being generous. Please consider donating to Mito organizations, families, fundraisers, local events, etc. There are so many families desperately in need. The difference you can make with even a small donation is HUGE.
For those affected with Mito please don't be afraid to ask for help. Reach out!