"There isn't anyone you couldn't love once you've heard their story."
- Fred Rogers

Thursday, April 29, 2010

Update 4-29-10


First of all, I would like to thank everybody who has donated and supported me through this journey. The donation options in the Contact section are being changed. We will keep the Paypal and the option to send to the Po Box open, but the other options we are doing away with. The blog will be re-vamped within a few days.

At this time we are putting things on hold, as far as treatment is concerned. We are still on a journey and donations are always welcome and appreciated, but we are looking into some things and may not be pursuing this specific treatment option. We will of course keep you all updated on this blog. Thank you for your continued support.

Lexie Willard Hill

Monday, April 19, 2010

Spaghetti Benefit Dinner - First Fundraiser

On Saturday April 17th, we had our first fundraiser. It was a Spaghetti Dinner in Logandale, my hometown. We had great help and worked really hard. We were very busy all week for preparations but we had a good time and were happy with the turnout. At the dinner, we also had a bake sale which was a huge hit. So many wonderful goodies and treats were donated. We will definitely be doing more of those in the future! We also had a rock wall and bungy jump set up outside and people had a lot of fun with that after dinner. My mom's quilt raffle was a huge success. So many people were excited and really wanted to win that quilt! Needless to say, there will be more quilt raffles as well!

We have learned a lot from doing this first fundraiser. One thing that we will definitely do next time is delegate photography to one person and that would be their only job. We didn't get a lot of pictures which is sad. Here are a few we did get.

Top Left: Melanie & Tracy Jones and myself. Melanie was in my home church ward when I was growing up and was my 7th grade History teacher but more than that she was my best friend at one point. She'd give me rides home from school and then I'd help her on projects at home. I ate dinner over at her place almost every night and we even went camping together once. She remains a great friend and it was awesome to have her there.

Top Right: Mr. Hatch and myself with Phoenix. Mr. Hatch was my very first teacher (3rd grade) when we moved out to the valley and I LOVED him! He was a great teacher and 18 years later is still supporting me. He knows me and still cares about me and I love him to death!

Middle: The Hiltons and myself. They were in the 4th ward with us and have kids our age. They were the ones who gave us the happy news that I was on the front page of the Review Journal for running the torch. I saw a guy running along me and taking a picture with a really official looking camera but didn't realize it was the Associated Press!

Bottom: Mary Lou Whitney. Everyone loved the bungy jump! This is my mom's first counselor in the Stake Relief Society!

I would like to thank everyone who bought presale tickets (even if they didn't show up), quilt raffle tickets, and bake sale items. I'd like to thank everyone who came to this event. I sincerely hope you had a great time! We look forward to our next fundraiser in the valley, which will be a Variety Show. Thank you for all the donations, the support, the good wishes and your interest in this cause for me.  Lexie Willard Hill

Monday, March 22, 2010

Macie Morse

Macie Morse is well known throughout the China Stem Cells/Beike community. She has improved so much and basically went from nothing to everything. She was the first one that I learned about who had gotten a driver's license, and being a bit older (more like me than a baby) the improvement was very uplifting because they say that younger patients show more success because they are still developing and their body is not set in it's ways. Macie proves that God is in control and anyone can benefit from this despite the correlations. I know what I've been blessed to know and I expect nothing less than a Macie Morse like miracle.


I'm sorry for another video but if you know me, you'd better get used to it. These blog posts will be diverse but I have to share this and again if you know me well, you know I love footage and I have a huge collection myself and honestly I love it so much because it has been my greatest inspiration and education and I have gotten to know people that I now know and love very much through it. There's a lot of reasons but it is one of my priceless loves.

This video is especially special because Shanon is so much like me. She is worse off visually but goes about things the same way, seems to have the same attitude and determination in life, and seems to have trouble with some of the same simple things, like finding small things on the floor and seeing playing cards. She is much older than me at 40. That is such a relief to me because in the ONH world I am very old. Out of all the ONH patients I have learned about online through China Stem Cells, I have been the oldest to be diagnosed. I am not the oldest overall, but to not be diagnosed til you're 26 is unheard of and very unique. Most again are babies or young children. Matthew Sims is now 22 and was diagnosed at 4 I believe, and Shanon now 40 was diagnosed when she was a baby For me to just barely be diagnosed at 26 is insane, unheard of.

It is so exciting to meet these new people who are so much like me when I grew up and knew no one who had this problem! I am loving this and it'll be even more exciting to meet new people all around the world who are the same as me, to meet them in person and live with them for over a month will be incredible. Enjoy this video, it's awesome.

In the video, her mom says "She's cheated her way through life, and she's done amazing, but this is for real." I loved that. That's exactly how I feel. I've cheated my way through life or faked it you know. That is so true, it's the same thing I talked about on my family blog post "It's official: My thoughts and Feelings" I said the same thing. I have faked it and pretended and just worked really hard...
I just thought it was cool to have words so similar.

Shanan -- ONH Stem Cell Patient from Stem Cells China on Vimeo.

Wednesday, March 17, 2010

Dr. Brothers Treatment Information Interview

This is a video my ONH representative sent me today. I thought it had some good information in it.

Dr Brothers' OD on Optical Adult Stem Cell Therapies from Stem Cells China on Vimeo.

Thursday, March 11, 2010

Moapa Valley Progress Article Corrections

There has been a newspaper article published about me. The link is here on this blog. The article is quite accurate but there are a couple of things that are false and I feel I need to clear them up.

While talking about my younger years, the article states that a diagnoses was not available. This is not true. I very well could have been diagnosed as a young child. The reason I wasn't is because I was not referred to those doctors who would have diagnosed me and also because my parents did not pursue those doctors after a certain point.

The article also states that I graduated from High School with honors. This isn't true. I think there was a miscommunication in editing. I did graduate from the LDS Seminary program completing honors all 4 years.

I just wanted to clear those things up for anyone who might have read the article in the Moapa Valley Progress. Thank you.


Welcome to my ONH blog. I love this blog. It's clean and simple but everything you need to know about ONH, treatment, or my journey is on here. Thank you to my cousin Karena Lapray for constructing it.

We are just in the beginning stages of this journey. This blog was a major factor from the start and it was finished in January 2010. For a brief history of current events: Sharrid and I were married 5 years ago. My handicap was very manageable before I got married and especially when I was living at home with the help of my parents. After having a couple of kids, I really started to realize how a handicap like this affects the kids and the whole family situation. Life became something we had to really work through. A few years ago, while I was pregnant with my 2nd son, we decided to pray and try to gain some inspiration of what to do to solve this problem. As a kid I saw my Optometrist and at the age of 14 he told me my eyes were perfect and that the problem was between the Optic Nerves and the brain. We stopped there for some reason. My doctor never referred us to any other doctor as far as I know, and my parents never asked...I don't really know why...but we kept trudging along with the way things were.

 I never received a lightning bolt answer but rather a "you're making this too complicated, just see a doctor" answer. No other ideas or "inspiration" was coming to me, so I decided to go back to the doctors. I had not been since that 8th grade appointment. What was the point? I made it to the doctor that could help me, the only Neuro Opthamologist in the state of AZ, Thomas Wolf. He diagnosed me after one appointment and a confirming MRI exam. I was diagnosed in October 2009 at the age of 26. A couple weeks later I found treatment although doctor Wolf told me "there's no magic wand". I discovered China Stem Cell News and was mesmerized. I studied quite a bit, called my mom right away, and we started planning to get to China. Like I said, we knew the blog would be the foundation of our effort and it was finished in January 2010.

We are now in March 2010 and planning and preparing for our first fundraiser. It will be a Spaghetti Dinner with entertainment and Bake Sale on April 17th Saturday at 6 pm in the Fine Arts Bldg. at the Logandale Fair Grounds. We have some great fundraisers planned for the near future as well. It should be an eventful and exciting journey, and anyone who comes and takes part is automatically a part of the journey for me and is doing this with me and I love that aspect.

I am now very involved with things happening here that will get me to China, all the while studying Chinese phrases, culture, and life in the Hospital in which I will stay for over a month. It's a great education and I just love the people that have gone before me and done this. Their information, blogs, and interviews have been priceless to me. I know when I am there I will meet wonderful people from all over the world that are just as special.

On this blog I will be blogging from now on until treatment is complete, meaning my eyesight is fully restored. I will blog about events, preparation for my trip, and my thoughts and feelings. I will then use this blog to communicate to all who want to read of my adventure in China as I receive the medical treatment. I will include pictures of events leading up to and then pictures of happenings in China. I will also blog my progress after I have returned home and the Stem Cells are working within me. When finally complete I will make this blog into a book.

Thank you for coming on and reading. I hope many people become readers and followers of this blog. Thank you for your support and I hope you have a great time filled with inspiration while on this blog and on this journey with me.