Hope for Faith: Supporting a Loving Family in Crisis

22 years ago, Faith came into our family and with it came 22 years of never knowing what to expect. The first moments of her life were scary and uncertain as she was born with severe brain damage and the doctors all believed that she wouldn't make it longer than a day, let alone the 22 years we've had with her so far. They didn't think she'd talk or walk or feed herself, but instead, we've gotten to see decades of her sweet (and oftentimes mouthy) personality, the independence we never thought she'd have, and she most definitely can talk as well as sing and dance. It doesn’t come without its challenges as she’s mostly non-verbal and is dependent on the care of those around her, but she beat the heck out of the odds she was given and we’ve cherished being able to experience life with her.

Unfortunately, just like 22 years ago, we're in uncertain times once more and the whole family has been beside themselves hoping that she’ll be able to beat the odds again.

We started noticing some troubling signs that something wasn't okay. Faith's hair started falling out, she was shaky, uninterested with eating, struggling to stand up from chairs on her own, and was generally not her self. So on March 29th, she was taken to a nearby Hospital and admitted. In her time there, we were very unhappy with the care she received as very little was done in the way of helping figure out what was happening or what we could do to fix it. Eventually, after moving her to the ICU due to her worsening condition, we were told by the hospital themselves that she was better off at a different hospital in the next city, which is where she was then transferred.

By April 1st, she'd find herself at a new hospital and started receiving care intended to diagnose the problem, but she was still on a downward trend that was horrifying to watch. Kidney problems, thick blood, trouble swallowing, still unable to walk, bruising horribly, and many signs of the potential of her possibly having leukemia, which is where the focus was then drawn to. At one point, she had to be taken off of pain medication because it lead to her having to have a full recovery due to a build up of co2.

Two things were on the table for diagnosis at this point: leukemia or a severe infection in her teeth. For leukemia testing, she’d need a bone marrow biopsy - which was the perfect timing to fix the teeth problem, as she would have to be under for both. Unfortunately, due to her blood issue, she was at a high risk of bleeding out, so they waited and waited and pumped the things they needed to until she was at good numbers, but decided to only do the biopsy.

On April 9th after a bunch of doctors argued over whether or not the teeth surgery was necessary, it ended up being that the call was made not to fix the teeth, due to the blood clotting issue.

Around this time we started seeing improvements. By April 12th, her levels were on track, her kidneys were better, she was talking and giggling, and eating full meals. We even got her dancing to her two favorite songs, Cotton Eye Joe and Single Ladies. We think this upturn has a lot to do with antibiotics, as the biopsy results came back, and we were told it wasn’t Leukemia. So that left the teeth.

With her doing better, it was decided that she would come home and they’d outpatient her oral surgery. So on April 18th, we turned our dining room into a more accessible room for Faith. She is still unable to walk, so it is complete with bed, lift, wheel chair, and a recliner. She came home, but she still wasn’t herself. She’d be slumped over in the chair staring at the ground and we’d end up struggling to keep her upright. The first night she was sobbing and screaming all night. But by April 20th, she had declined again and became unresponsive, so we took her back to the hospital to be admitted once more.

She’s been back in for three days as of writing this. In that time, her heart has stopped and restarted on its own twice, remedied by bags and bags of potassium. She was mostly unconscious aside from one day of reprieve after the whole family went to see her and prayed together that she’d make it through this. That night at 3am, she was able to say hello and say she wanted to eat, which has been something she has been mostly unable to do over the last month. This felt like a sign of hope, because just as it was feeling hopeless, we once again got to be witness to, just as she had when she was born, her opening her eyes when we needed to see them the most.

A neurologist came in and said it was the teeth. The team of doctors thought it was her teeth. We’ve even been saying teeth since the beginning.

Faith has now spent the last month with tubes and wires and monitors on her entire body just to make sure she’s as comfortable as possible and so that she stays alive. Outpatient isn’t an option, no surgeon will fix the tooth problem as of right now for reasons we have yet to understand, so all we’re left with is missing our Faith and fearing that we’ll always have to miss her.

All that to say, Faith’s mom and dad, Cindy and Ron, are having a hard time beyond the grief and exhaustion they’re experiencing through this.

The last month of medical bills are starting to roll in and they’ve had to take off a lot of time from work to be by her side. Ron is a truck driver, gone most of the week, so it’s been especially hard for him to leave not knowing what’s happening or what could happen when he isn’t there to protect his baby. But his PTO is starting to run out, which means inevitably, he will have to go back on the road.

If there’s anybody who would like to donate, it will help immensely with any number of the financial issues arising, but most importantly, so they can focus on getting their baby better instead.

Please and thank you -