Help Ashley fight PRS

For: Ashley
Lubbock, TX
Organizer: Vanessa Taff
Help Ashley fight PRS (Ashley)
$825
of $1,400 goal
58% Complete
Raised by 12 donors

The Story

"Rare, acute, progressive brain disease", "No treatments", "No cure".

These are the most terrifying words I can think of, and they are the very ones (among others), that I have heard over the last month, since my daughter was diagnosed with Parry-Romberg Syndrome. If you are anything like us, Parry-Romberg Syndrome is something you've never heard of. It effects around 1,000 people worldwide, mostly females, and usually on the left side. It causes tissue, skin, fat, and bone to shrink, distorting the face. The illness can also wreak havoc on the eyes, nose, teeth, mouth, and ear on the effected side. Along with the changes it causes to appearance, it is often accompanied by severe facial pain and migraines. 

With Ashley, it started with migraines that brought on vision blackouts  and has already progressed, to facial and ocular seizures. She has no hearing in her left ear and almost no vision in her left eye. There are no adult teeth on her left side. MRIs show severe frontal lobe abnormalities and what may be either lesions or atrophying in the left side of her brain, (further testing will tell us which).

As we start down this road, we know that we face an arduous journey of specialists, tests, surgeries and a lot of struggling, both physically and emotionally. Ashley is in severe pain more often than not, something that effects every single aspect of her life. She is scared about what the future holds, as am I. There's nothing quite like seeing your child suffer and not being able to do anything about it. We are clinging to our faith and taking things one moment at a time. It seems each new specialist's appointment brings more answers that are not at all what we hoped for. 

This diagnosis has thrown our world into a tailspin. The choice to put together a fundraiser was a difficult one, as I like to think I can take care of everything on my own, but this last month has greatly challenged this belief. Money has become my second biggest worry. Ashley is having multiple medical appointments a week, which means missing work. Missing work means a short paycheck, which makes paying bills nearly impossible. She's been to one appointment on her own because I felt I couldn't miss work and that is something I will absolutely never put her through again. The reality of this disease is just to heavy and the information she received that day was something she shouldn't have had to deal with alone. The $1400 I put as a goal for this fundraiser is a lot of money, two months worth of my pay if I'm honest, and I hate having to reach out for help. We are only a month into this journey, but that's enough to leave a family that lives paycheck to paycheck in a very scary situation. Any help at all at this point would be a huge blessing, allowing me to take her to her appointments and tests, without having to choose between doing that or keeping a roof over her head. 

Fundraiser Updates

Posted on June 12, 2018

UpdateImage

Posted on June 12, 2018

On the positive side, Ashley graduated and I’m so so so proud of her! She’s accomplished so much this year, so much the doubted she could. She’s my little warrior. 

Everything else, I’m not even sure what to say. We are barely hanging on, both financially and emotionally. Ashley’s PRS is progressing, causing her and I both to stress out. Her left cheek is losing mass, hardening, and giving her quite a bit of pain. We are waiting on answers about how to handle it. I’m not doing great, though seeing improvement. Left hand still weak, head still fuzzy at times, some things me brain just won’t do. Depression is kicking my butt. Everything seems so hopeless. Utilitlies are about to be cut. It feels like ending up living in the car is a real possibility. To answer some concerns I’ve gotten messages about, yes I’m still working. I’m actively looking for a second job. I’m still in school. our situation isn’t because I’m lazy or not trying or doing something wrong. I’m doing all I can, doing my best, and praying things will be okay. I’m scared constantly. My days are all work and tears and sleep then repeat. I don’t know how to change anything for us, but I am trying. Thank you for the prayer, the sharing of our story here, and the donationS. All of it is making such an amazing difference for us. Even though things are hard and scary, we are blessed. 


Posted on April 8, 2018

UpdateImage

Posted on April 8, 2018

Hi everyone, we have raised 50% of the goal thanks to your generosity. Please share this fundraiser with your family and friends to help us reach our goal. 


It's been over a month since my last update, and I apologize for that. Life since the stroke has been a challenge. I cannot properly express how much your thoughts, prayers, and support have meant to us. The stroke simply set our world spinning wildly out of control.


Ashley is doing well. At this point she has just over 30 days left before she graduates from high school. After her diagnosis, there were serious questions about if this day would ever come. She's worked hard to get here, going to school when I wasn't sure she should, struggled through incredible pain and seizures, and kept going with determination that amazes me. Her "bad days" are popping up more frequently in the past month, likely because of stress. We knew to expect it, but it doesn't make dealing with it any easier. There have been issues with her meds, insurance, and the doctor not all communicating, making life more stressful than it needs to be. There have been days she falls apart over how this syndrome has impacted and changed her life. She has been trying not to buckle under the stress of school and looming deadlines, taking both English III and English IV at the same time has been especially challenging. And along with the joy of impending graduation has come the reality that her dreams of leaving home to go to college will not be coming true. With such heavy neuro involvement, things are complicated. This is all new and we are learning to work with her condition, to handle things, but as of right now all the doctors seem to agree living on her own is not a safe option. Still, she keeps going and most of the time accepts all this with incredible grace. 


As a parent, these days I feel like a failure. There are all these things a senior should be doing, should have, and I can't provide them. A dear friend took her senior pictures, something I am so incredibly thankful for. We were blessed with help on her dress, as well as her cap and gown. Things like a yearbook, graduation invitations, anything celebratory really, prom tickets... I can't provide any of that. The stroke has left me struggling physically, mentally, financially. I am not able to do all the things I once could do, work as I have for years. Recovery is not going as fast as I would like, but I know things could have been so much worse. The truth is, I can't pay the rent or all of the bills, we are terrifyingly on the edge of disaster, and I don't know what to do about that. As such, extra expenses are impossible. I've sold so much in an effort to keep afloat, there's really nothing left. Of three prescribed meds, I am only taking one, and even that one a family member purchased for me. And I'm sitting here crying because I hate asking for help of any kind. The thing is, I want to give Ashley the world, but in the past month or so, I've failed at even giving her the basics. 


Any help at all really does so much and I thank you all for everything you've done for us. Your prayers and kindness touch us deeply. We are blessed and I know things will get better, one day at a time. 


Posted on February 12, 2018

UpdateImage

Posted on February 12, 2018

I have not updated in awhil, life has been chaotic. The good news is neurosurgery has decided Ashley doesn’t need them! Yay! She still has good days and bad, but this was positive news! Now we keep taking each day as it comes and looking forward to graduation. 

The bad news is I was admitted to the hospital three days ago with what I thought was an amazing net ear thing. In reality, I’ve had a stroke. This is unexpected news and has left me stunned. I am fully aware it could have been much worse and am so thankful it wasn’t. I do have some impairments and don’t know what the future holds. What I do know is I’m in the ICU, I can’t work, I’m not insured, and am terrified. I need help. 

Thank you for your prayers and support. 

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