A Wheelchair Van for Hailey

Please help Hailey's wish come true!

Hailey is an incredibly sweet teenager who always has a smile on her face despite her challenges. She was diagnosed with an unspecified Leukodystrophy at age 4. Leukodystrophy is a progressive neurological terminal brain disease. Along with leukodystrophy Hailey also has a seizure disorder and is in heart failure and recently had a second pacemaker surgery. We are working with Hunter's Hope to make this fundraiser successful. 

Due to Hailey’s permanent disability and declining health/weakness, Hailey is unable to be transported in a non-wheelchair-accessible vehicle. Due to her age and size, this is difficult on us as her parents as we currently lift Hailey from her wheelchair to her valet seat in our current vehicle. Hailey doesn't have truck control, nor can she adjust herself or bear weight on her legs. She has been non-ambulatory for 5 years. We have been lifting her from her wheelchair for any position changes. We try to ask for anyone around to assist in the lift but it is mostly Hailey and her mom when Hailey goes anywhere. Just going to school and back would be 4 lifts. Hailey's dad works in a different city and has had to be late at times when he helps to get Hailey to school. Hailey goes to the same school where her mom works. Hailey isn't able to take the school bus as her mom works later than the bus would arrive at home, so they go and come back together. We currently have no respite or nursing hours.  Hailey is nearly the size of her mom and weighs well over 100+ pounds and provides no weight bearing or assistance.  

We take Hailey to and from school and to and from medical appointments. 90% of her appointments are also out of state. We often visit a Leukodystrophy Care Network Center 400+ miles away from home every 3-6 months. After a certain age and weight car seats are not available. This lifting in and out of the vehicle happens several times a day with mostly her mom being the one doing all the lifting and straining. She has been with back pain for a few years now.

We also live where temperatures reach well over 100+ degrees in the summer and Hailey has a heat restriction with her pacemaker. We want Hailey to be able to be placed in the vehicle safely and also be comfortable.

We are in the process of getting a tilt and space wheelchair to also provide more support. A wheelchair accessible vehicle would be our solution. But the astronomical price seems unobtainable at this point. We are at the point where we wouldn't be able to convert our current vehicle because it has too many miles on it.

Time is not on our side and we hope to get any help we can with this challenge we are facing.

                                                  DONATE HERE

Here is the link to donate: https://www.classy.org/fundraiser/5798259

How to Navigate the Website

 WELCOME! 

Here you will find the story of how our journey with Leukodystrophy began. 

When Hailey was a baby I wanted to keep a diary. When Hailey got sick I decided to open my diary up for others that may have a medically fragile child or for anyone who wanted to keep up with us. Our story, our struggles, our daughter. It was a place where people could go to find out how Hailey was without having to ask me. 

Now that things are more calmed down I don't write as much anymore. Hailey has had her g-tube going on 10 years. Hailey has her Pacemaker and that's going on 7 years. This website is where and how things started. Where we are now is mostly on Facebook for a quick "How are we doing?" day to day type of thing. 

So for the HOW DID THIS ALL START? This is the website for that. For the HOW ARE THINGS NOW? That is on our Facebook Page. 

I know I'm getting to the point where we will phase out Facebook too, maybe turn this blog into a pamphlet/book one day????

But a lot of people who look up leukodystrophy find us and find resources they will need to navigate their journey. 

Leukodystrophy has come so far in the last 10 years and there is so much more help out there now. I know our story is very interesting and what we had to go through is pretty incredible. When people find our website and tell me what they got from it makes me happy. I'm happy we can help others. Let others know that they aren't alone. Things can be horrible, but they can also be so much worse. 

Start at the top and read how it all began. Then follow the journey to where we are now. 

Grab some tissues and read on. 

Dusting off the Blog

 The last time I posted was February of 2020. Boy has a lot happened and there is no way I have enough time to list everything that has happened in 4 years. So long story short!

2020 - We stayed home mostly. We were trying to get Hailey's seizures under control and help her regain and maintain her abilities. We still drove to Salt Lake for all her appointments and Hailey got a new wheelchair. It's pink of course!

2021 - Hailey went back to school in person but was spending more time in her wheelchair and not being able to ambulate. Hailey was getting ready to move onto high school and we received our placement. Hailey's school would be about a 20 minute drive away from our home and that wasn't sitting well with me. I decided to use my college education and become more involved in the school district. Hailey's health was declining. 

2022 - Hailey would be starting High School and I would be starting my new position as a para professional for the special education department at a near by High School. Hailey's school did not approve of me being too close by. They saw me as a parent first and when I voiced concern for where I saw that there was a lack they slowly started to restrict me from being at the school. 

I loved the school I worked at and I became familiar with the administration and the teachers. They saw how hard I worked but also saw that Hailey was my priority so I wasn't able to always be at work. When Hailey's not at school I can not work. They asked me over and over how I could get Hailey over to be at this school and I guess the Universe heard and went to work. 

2023 - Again a huge decline in Hailey's health. She was full time in diapers, and completely non ambulatory. She was a floppy bunny that provided no assistance when moving her. We had a 2 story house that was no use for us. Hailey was 14 almost 15 and we had to carry her up the stairs. We're no spring chickens so it was taking a toll on us. We also do not have a wheelchair accessible vehicle and taking her places is quite the feat. 

We knew we had to move to a one story house and we had to move quickly. Interest rates were crazy and school would be starting again soon and Hailey would be starting her sophomore year. After searching for Houses that would provide Hailey's needs we finally found one. So we had to move. That was an adventure! The house we found needed WORK and the work had to be done before we moved in. I wanted ZERO carpet in the house for Hailey's wheelchair so her dad and I laid the flooring board by board! Another very long story short after being taken advantage of and being bamboozled and being stolen from we were finally able to move in. The house is great for Hailey! We even redesigned her bathroom to be wheelchair accessible. Which even though we weren't planning on that because we weren't in a great financial situation we knew it was something that HAD to be done. 

Hailey started experiencing hemiplegic migraines which were very similar to seizures and she would lose function or be "temporarily paralyzed" We were thankful that our team of doctors helped us put together a protocol so we could handle these at home. We had had numerous hospital stays along with our SECOND flight for life to Salt Lake. (spoiler alert the experience was just as terrifying as the first time IYKYK)

I decided to continue to work hard toward moving up with the school district. Hailey would finally be going to the same school I was working at and she has her own 1:1 aide that helps her daily. The teacher was amazing, but everyone was overwhelmed to know that there was a medically fragile terminally ill student at the school. The nurse and I met regularly and I was able to be near by to help when needed. Towards the end of the year we discovered that Hailey was in critical heart failure. She has pacemaker induced cardiomyopathy. She would need surgery for a new pacemaker. This would be her second one. We would be spending Christmas in the Hospital in Salt Lake City.

2024 - Hailey had her surgery and spent a few months recovering at home. During her 8 week post op check up we caught the dreaded virus for the second time and that took us even longer to recover but Hailey had regressed a lot. She also had her second Grand Mal seizure. It had been 4 years since her first one and again regressed. Her current wheelchair is not what she needs so we are in the process of getting an anti gravity or tilt in space. I have increased all her therapies which prohibits us from attending school 5 days a week. I had tried to get Hailey all the things insurance has denied so everyday is a fight. 

I've upgraded my credentials so that I can substitute teach while Hailey is at school. Hailey will be entering her Junior year, we will still have appointments in Salt Lake and we will still fight for everything that she needs.

So that's just the short condensed version of four years. I've neglected this blog and my thoughts but I found new outlets. I sew, Hailey and I craft. I have co-workers that are friends that I am able to talk with and spend time with who also care about Hailey. So for now we are still around we just don't post as much. 

Playing Ice Hockey

Yesterday was such a fun night for our family! I signed Hailey up to participate in a ice hockey activity with the Paralympic organization! Her adaptive PE teacher invited us to attend knowing Hailey would enjoy it. She had SO much fun and even made a goal! It was great to see her be able to “ice skate” and be with other children of different abilities. I (mom) have never been in ice skates before had to learn pretty quick so I could take her on a few laps around the rink. Hailey was hesitant at first but when she saw other kids out there and waving and smiling she wanted to give it a try. We spent about an hour and a half on the ice with smiles the whole time. What a great organization!

Trunk or Treat at the Ronald McDonald House

Hailey had a great weekend! I don’t know who invented trunk or treating but they deserve a high five from every mom that has a medically fragile, disabled, or special needs child. On Halloween Hailey can not go up to houses and ring the bell like a typical child. Nearly every house (in our neighborhood especially) have steps and Hailey is either using her walker or her wheelchair. It’s not easy. Also there aren’t too many events for kids like Hailey. She can’t handle strobing or flashing lights, she can’t climb up big bouncy slides, and maneuvering through chaos and crowds is very uncomfortable. 
We’re so thankful that Hailey has friends in the community that sees this and invites her to be a part of their fun. Thank you to Ronald McDonald House Las Vegas and the RED Shoe Society for letting Hailey join your trunk or treat. She loved decorating our car and passing out HANDFULS of candy and then going around in her walker as well. It was a fun night for us as a family and we really appreciate it! 
Thank you to Ferell, Julie, Ashley, Buffy and everyone else who put together and participated in such a great event. ❤️ 👻 🎃 🍭

Bathtub safety rails

Through Amazon we were able to order some portable handrails for the bathtub for Hailey! It has made a world of difference. This is an example of something I would say is a medical necessity for safety reasons that insurance does not pay for that we have to pay for out of pocket. Thank you to those of you who send us Amazon gift cards to help with this cost. 

For some fun surprises or for gift cards Hailey has an Amazon wish list here: http://amzn.com/w/MYVW5QFJV9ZL

Happy Place

A week ago I received this message from our local Ronald McDonald House Charities of Greater Las Vegas: 

We nominated Hailey for Summerlin Macaroni Kid’s Kindness Super Star for 2019 during their September Kindness Month campaign. We are excited to share that she was selected!

We truly appreciate Hailey’s love for RMHC and the work she does in collecting pop tabs, decorating lunch bags, donating items to the House, and to you amazing parents for sharing her story and your RMHC experience at our Run in April. You are a wonderful family and we always love seeing Hailey’s smiling face when she comes by!

Her prize was winning a family 4 pack of tickets to that new Instagram event at Mandalay Bay called Happy Place. We took my niece and really had such a great time! Proud of my girl and her philanthropic heart. It was a great family day!