Mobility for Mindy
Hello friends! I would like to take this opportunity to introduce you to Melinda "Mindy" Rao. Mindy was born with a rare form of Muscular Dystrophy in 1995 and at the time, her type of MD had only been discovered in 1992. With limited knowledge of the diseas, the doctors gave her less than a twenty-percent chance of living long enough to even leave the hospital. Mindy's grandmother and grandfather, Lynn and Jerry Trott, made the decision to raise her as long as she lived - which at that time, they were told could be day to day, maybe a few months but definitely not more than 3 years old. Her first year of life was very rough but once she made it past her first birthday, she started to flourish and, amazingly, on 02/02/2020, Mindy turned 25 years old! In all these years, Mindy has never required a hospital stay until recently.
Her loving Aunt is Lori Dando, who says that Mindy is more like her little sister than a niece and means more to her than anything in the world.
Mindy is an enormous bright light in this world and in so many lives and has always been able to turn any frown into a smile! She LOVES live music, balloons, Elmo and Barney and has always been the biggest fan of the big cheese....Chuck E. Cheese, that is! And one of her absolute favorite things are her annual visits from "Ho-Ho" (Santa -- AKA - Aunt Lori!) Mindy was like the mayor of everywhere she went! :) The reality is, she started a life-skills pre-school class at the age of 4 and from then on, she always wanted to be on the go!
Mindy was admitted to a regional hospital on 9/17/19 for a feeding intolerance and what should have been a 4 day stay turned into an unimaginable 97 horrific days between the hospital and a rehabilitation facility. She LITERALLY walked into the hospital on 09/17 (wearing her AFO leg braces) while holding her grandma and grandpas hand and left the rehabilitation center with the same feeding intolerance, along with a trach, a colostomy and a stage 4 pressure in which her coccyx bone was exposed once the dead tissue was finally able to be removed. It's approaching the six month mark and there is no telling how much longer it will take to heal. The severity of these types of pressure wounds can take up to a year or more to fully heal. She is now in a wheelchair twice the size of her previous and has no mobility. My friends... her entire quality of life has been taken away.
She is no longer allowed to eat as she normally did. Mindy now has a G-J tube for 24-hour feeding (which was supposed to be the temporary plan for the feeding intolerance) which completely bypasses her stomach -- and will now be her new normal. She is now only permitted "pleasure feedings," as tolerated. Literally 1-2 ounces of water followed by 1-2 ounces of yogurt or apple sauce up to 3x per day -- forever.
Due to the doctors lack of care and not listening to the family's concerns regarding the care she was receiving upon her arrival, their greatest fear came true -- she aspirated in the early morning hours on the day she was to be discharged and her left lung collapsed. They rushed her down to the ICU and were advised by the attending doctor that her heart and other organs were starting to shut down and to prepare themselves. By some miracle, she pulled through and was now intubated in the ICU. After a few days, they felt she was ready to be taken off the vent. Sadly, this is when they almost lost her again. After removing the vent, they advised the family to leave the room as the right lung had now collapsed. They stood and watched in horror outside the room as she turned blue, her oxygen saturation levels dropped to fatal levels and were once again faced with the likelihood of losing her. Again, by some miracle -- her incredible will to live -- her sats rose and she was again intubated and critical but was stabilizing. They were later notified by the attending doctor that it appeared they did not complete a thorough job of suctioning the mucus out of Mindy's mouth and throat (which is one of her main issues due to her MD) and when they pulled the vent out, a mucus plug was lodged into her right lung which is what caused the second collapse. It's an actual miracle she is still with us today.
After another attempt to remove the vent (approximately 10 days later - way too long for someone with MD) she lasted two minutes before her lung started to diminish and back on the vent she went. Due to the aspiration issues and being intubated for too long, they were now faced with two options: allow the hospital to perform a tracheostomy or watch her wither away continuing over and over to try to remove her from the vent -- a day which would have never come.
In the early days of the ICU is when she developed the stage 4 (the worst) pressure wound from not being turned properly (at all!) -- The staff also kept this hidden from the family for multiple days!
The nightmare continued. Due to continued multiple complications due to improper care, they were then faced with an option they prayed they would be able to avoid and had to make the extremely difficult decision to allow the hospital to now perform a colostomy. Had they not made that decision, the extremely large pressure wound would have inevitably become infected due to its location at the base of her spine and just above the rectum and the likelihood Mindy would have been able to survive that infection was incredibly small.
This has taken ALL of her mobility from her as she is no longer able to stand, walk or move freely on her own after lying in a bed for 97 days. She cannot lift her head off of a pillow, push herself up at all or even roll over. She needs to be lifted in and out of bed and in and out of her chair. She has been transitioned to a much larger wheelchair for the stability that she now requires. Due to her pressure wound, she is only able to be upright for 15 minutes at a time and then she has to lie back for 5 minutes -- an endless cycle for her all day, everyday.
Even with the Physical and Occupational therapy she is currently receiving, while she is making some progress, it does not appear likely at this stage, with the progression of her Muscular Dystrophy and the enormous setback from the hospital stay, that she will ever be able to walk again. They PRAY with time, that perhaps with her AFO leg braces, knee stabilizers and a walker, she may be able to take some steps on her own -- they are trying to be cautiously optimistic.
It was normal to see her out at the Dollar Tree getting a balloon or at Chuck E Cheese randomly or for her birthday parties. You'd even see her out for live music at Pearson Park or downtown New Castle watching a band on a Friday evening. She would just sit there excitedly, waiving her hands and shaking her head back and forth. She just loved life and being outside exploring. Everywhere she went, people knew her and adored her.
At this point, transporting Mindy is a massive challenge for her family. She is not able to ride in a regular vehicle due to the pain from her pressure wound and lack of mobility to get in and out of a vehicle as she is no longer able to assist with this process. She is literally 95 pounds of dead weight. In addition to that, it's nearly impossible to transport her wheelchair after having to break it down into multiple pieces in addition to all of the medical equipment she now has to travel with. She was denied access to ACTS transportation as they could not accommodate the needs of her wheelchair or take requests for specific times for appointments. Ambulance trips to doctors have become incredibly straining as well as unpredictable as emergencies always come before a transport, and rightfully so. Simple doctors appointments turn into seemingly day-long events and after therapy sessions have been made to wait up to an hour and 20 minutes for a ride home.
This family has watched Mindy transform from an incredibly happy, fun, silly, incredibly sweet and loving young lady that loved to do all of the above and more, to a very distraught, stressed and depressed young lady who is unable to do any of the things she loves -- and the worst part of it is that she doesn't understand why. Cognitively, Mindy is between 2-5 years old and it's impossible to explain why she goes back and forth from her bed to her wheelchair and in front of her television to watch her videos all day. They can't explain why she is not able to go anywhere or do anything that she used to do or why she is in so much pain. She simply passes her days sitting in her wheelchair watching her Barney, Elmo or old home videos of all of her birthday parties and "Ho-Ho" visits -- something that used to bring her joy.
She does not enjoy any aspect of her life at this point. While the family has seen some limited improvement, she is sad, extremely depressed, irritated and in pain, and she is not able to communicate that in any other way than acting out with prolonged crying outbursts, anger and frustration with her family -- her care takers. Due to the extreme trauma she suffered from the pressure wound and the length of stay -- being in bed for nearly 100 days, they've also noticed additional cognitive delays in many ways including mannerisms they've never seen before. They lost a huge part of their little angel that they can never get back -- and they often find themselves locating to a different room in the home to cry so Mindy does not see. In addition to her grandparents, her Aunt Lori stayed with them for well over a month after Mindy came home from the hospital/rehab facility to assist with her daily care and had taken on the night shift roll to make sure Mindy received the 24 hour care she requires while also working her normal job during the day. The nursing agencies have just recently (as of February 27, 2020) been able to find some nurses to cover a large majority of the shifts (since coming home December 19, 2019) but are still searching for more help -- the care is never ending and there are no breaks. Mindy's bedroom, which once represented that of a young girl with all of her favorite things, is now essentially a hospital room, including a hospital bed and all of the endless equipment and supplies needed for her round-the-clock care. The changes that they have witnessed in Mindy and the new reality of the added medical issues are completely devastating -- emotionally, physically and financially.
The purpose of this campaign is to raise funds to allow the family to purchase a modified wheelchair van to transport Mindy. This will allow her to have some form of the normalcy she once knew -- it will allow her some freedom and to gain at least some of her quality of life back that has been stolen from her, even if she is unable to participate in the same way. She would be able to be transported from place to place in lieu of being immobile in her home. It would also ensure that she would be able to make it to doctor's and therapy appointments as needed, without making it a day-long experience or being late or made to wait for a transport home.
After EXTENSIVE research, there are dealerships that are local that specialize in these modified vehicles only. It should be noted that these modified vehicles can run up BEYOND $80K, which is mind boggling. The family was initially searching endlessly for a pre-owned van but found that, with no warranty in place, and the modifications alone at around $30K or more, there would be no way to pay for repairs (the rate JUST for the technicians, before any parts, is $105 per hour), in addition to the possibility of new tires, braks, etc. Unfortunately, (and unsurprisingly) healthcare never has and never will offer assistance for modified vehicles for disabled and special needs persons. After initially being denied by the PA waiver program for assistance with just the modifications, the family appealed the decision and were granted some funds towards those modifications to help offset the cost of the van. They've also looked into other grants, etc., with no luck, and of the few possibilities, they take many months and you are made to jump through hoops because the demand FAR exceeds the amount of funding available. Unfortunately, the need for the van is immediate. I can tell you that NO FAMILY could ever prepare for the sudden need for one of these vehicles -- or the ability to incur the enormous expense, not to mention additional insurance, etc.
On top of the need for transportation, the family has also been challenged with a great deal of medical supplies that insurance either refuses to supply or will only supply an inadequate amount for the care that she requires. This has led to a large amount of out-of-pocket expenses for supplies and equipment not covered by insurance, which is just sad. Our healthcare system is so incredibly broken.
The photos below are a mixture that represent everything that she was and who she is now due to the events that took place. The family's hearts are shattered.
This family has been completely uprooted from the world they have known for all of Mindy's life. It is my hope that anyone that is able to support them during this unfortunate time, will do so. Any amount will help, friends -- even if we are able to simply raise enough for a down payment or to cover some of the medical expenses they are incurring daily. I am so thankful for any support you can lend them, even if it is a Facebook share or a prayer. Those are always welcome!
Thank you for reading this story and I look forward to the day that Mindy can again visit Cascade Park and see the Christmas lights, go watch a live band, go to Build-A-Bear at the mall, see Chuck E. Cheese live, head to the store for her favorite balloon or help grandpa with grocery shopping at Giant Eagle and Walmart --- from her very own van!
THANK YOU SO VERY MUCH FOR YOUR SUPPORT. 
