Help with a wheelchair van

My name is Katie. I’m a 31 yr old single mom to a 9 yr old atypical child who had a stroke at birth, has mild Cerebral Palsy, anxiety and is my world.

 

 

Here’s our story,

 

 

July 26, 2018 after getting home from a minor procedure, I noticed that I was unable to stand or walk normally. I had been feeling like I had “jello” legs for a couple months before that, but that night my legs felt a lot different than just “jello”. My mom took me to the ER and after a while of convincing them that I wasn’t faking or was there for pain pills, they decided to admit me. After the next few days and many tests later, they diagnosed me with Transverse Myelitis aka spinal cord inflammation. The reason is still unknown. They sent me to rehab for 3 weeks “to adjust to my new life” and where I was able to start walking again with a walker with lots of hard work.

 

 

Fast forward to February 2020, I had another flare up of Transverse Myelitis. They sent me to rehab for another 3 weeks but this time I was unable to get any movement back below my waist. I wasn’t able to get any strength back in my legs. So they started to teach me how to work on things from a wheelchair and they told me that I needed a hospital bed.

 

Since I wasn't able to move my legs on my own after this round, it was much harder to move around in the bed even with the rails on the bed. So in May, I found a spot on my heel and I immediately knew I had a pressure sore. Which only kept getting worse over the next several months even after going to the wound clinic weekly. I ended up getting a spot on my other foot as well because they put my foot in a cast and boot. My right foot scraped against my left which also made a sore that just wouldn't get better. So after being referred to another Doctor at the wound clinic, she politely asked me what good my legs were. I told her that they're useless. And we talked about amputations. She told me that I could think about it for a couple months, but that if I didn’t decide to do that I could be battling this for up to 3 years or longer. I had already thought about it for months before even seeing her and decided to do it because all I was doing was carrying around dead weight all the time.

 

In November, one of my wounds got infected and they put me in the hospital again to get rid of the infection and I told them then to just please go ahead and do the surgery.

 

So November 10, 2020 (my moms birthday ) I had bilateral above the knee amputations. Because I have no feeling, I had no pain. A blessing from being paralyzed. They wanted me to go to rehab again but I couldn’t stay away any longer from my then 8 yr old. I was able to go home on the 13th. Things didn’t go that smoothly because one of the incisions decided to come open and also get infected but with a wound vac and antibiotics I didn’t have to go back to the hospital. Life after surgery has been so much easier with no legs. I’m able to move around alot more than I was before and not have dead weight dragging me down. Physically losing my legs didn't bother me mentally. I had already lost the ability to walk normal in 2018 and completely lost the ability in 2020. I accepted that I was never going to walk again but I knew having the amputations would make my life easier.

 

 

Since getting discharged in March 2020 I have been completely wheelchair bound and wasn’t able to get in a regular car to go to appointments or anywhere for that matter. So, we had to look for wheelchair vans, which if you have ever looked at, are not cheap at all. I was able to take money from my back payment from SSI and from the stimulus checks we received and buy a used van. I was also approved for a new wheelchair and received that in March 2021.

 

 

I thought things were going well with having a van and a new chair. Even though it's not a van that I can drive myself yet. Then when we decided to take a girls trip to Pigeon Forge, we broke down. We have taken it to 3 different places now and no one seems to know why it is shutting off. This last time leaving Dad and I stranded in Winston at the hospital for an appointment for a lumbar puncture. (I switched Neurologist and she's still looking into why this all happened in the first place and to see if it’ll happen again). We had to have the van towed back and get special transport to come get us since I can’t get into a regular car. This was the same day that I paid $511 to replace the computer in the van, because they thought that was the problem. Also while waiting for transportation, my new wheelchair decided to break. So I'm also waiting on a part to replace it as well.

 

 

My daughter is what keeps me going everyday. She has a heart of gold and loves to help others when she can. Earlier this summer, she set up a lemonaide stand and raised $100 to send to the Ronald McDonald House in Winston-Salem because she knows that we stayed there when she was in the hospital for 3 weeks after being born. We both love giving to them and others that need it.

She has kept me strong through all this and through a separation that happened days before the first hospital stay.

She is going into 3rd grade this year. She started kindergarten 2 days after I was released from the hospital the first time around. I wasn’t able to take her school shopping the first time, go to open house or meet her teacher for the first time. But thank God I was able to make it on her first day. I haven’t been able to take her to or pick her up from school alone. That is what I want to do and I will do it one day even if she is in high school before I’m able to do it alone. She has several appointments and tests (MRI&EEG) coming up because she has been suffering from headaches and emotional problems. Right now, I’m not sure how to get her there with me not having my van because I will not miss these appointments, even though I know she is always in great hands with family. I’ve missed to much as it is. She goes to physical, occupational and speech therapy weekly and I don’t always get to go. All I want to do is be independent in driving myself and my child around. My family is absolutely amazing at helping but it is not their responsibility to take her places.

 

I spoke with Vocational Rehab and they said the only way they can help with a van is if I had a job I needed to get to. It's hard to find a job in my current situation, especially with no reliable transportation. After driving, looking for a job is my next goal.

 

I can honestly say that I miss driving more than I do walking. In a wheelchair I can do almost everything for myself. But not being able to drive takes a lot more freedom away. I want to get that back.

 

So I’m here asking that if you please can, help me get enough money for a decent down payment so I can get me a reliable wheelchair van that I can drive and afford monthly. I do not like asking for help, but have accepted the fact that I need to. If you cannot donate please share and keep us in your prayers.

 

 

 

Thank you from the bottom of our hearts.

 

Love, Katie and Adelynn

 

Aka the disabled duo