Friedreich’s ataxia

Updating the blog was more of a challenge than I thought it would be. Our schedule (treatments and physical therapy) kept us busy everyday and China blocked my blog, so I decided I would do it after we returned home.

The trip was amazing, and I’ve seen so many improvements. In fact, I’m still seeing them every day after being home. Physical therapy there was fun, hard, and rewarding. It was all one-on-one, but nearly everyone on the floor had it at the same time. It was neat to see others making improvements every day.

I brought home some of the physical therapy I did in China. We video taped a few of the sessions so I could continue it once I got back. I do the exercises daily and can see a huge difference from where I was before in terms of strength and stability.

The first day at the hospital, my biggest challenge was my balance; the final day of therapy, my therapist told me once I get my left knee built up (enough to support me and not hyper extend), I would be good as new. That’s been my objective since getting back; we purchased a stationary bike and elliptical machine to help build my knee strength, in addition to the balancing exercises I learned in China. The doctors in China said I will continue to make and see progress for up to 18 months. If I don’t get where I want to be within the 18 months, I will go back for more treatments.

We met some amazing people at the hospital, and that made the time go by fast. Thirty-three days is a long time to be in a different country, let alone in a hospital. We had some fun times there, too. The guys played poker. My mom screamed when Joe and Matt brought her back a dog’s head, crocodile, or squid on a stick from the local market. Some people there have an odd diet. The local night clubs also kept us entertained one night. The people that we met, became a second family, as well as the staff at the hospital. I remember walking into the hospital the first day and fighting back tears thinking, “Oh gosh, what am I doing?,” and the day I left fighting tears thinking, “I’m ready to go home but I want to bring so many people with me!”

Thanks again to everyone who supported and followed me through my journey. I think FA once had a hold on me but because of this experience I am conquering it.

Mandy and her mom are OK and did not feel an earthquake that hit the central part of China Monday afternoon. A 7.9-magnitude earthquake took down buildings and schools, killing around 9,000 people, according to the Associated Press. Mandy and Brenda, thankfully, are in the eastern part of the country. They did not feel the quake, and didn’t even know about it until they heard the news on TV.

Mandy and her mom, Brenda, left for China today. They will travel for about 30 hours until they finally reach the hospital, where they will spend about a month for Mandy’s treatment.

The fishing tournament raised about $5,000, and the total raised came to roughly $43,000. Thank you to all of those who donated money, attended an event, or showed their support. This fundraising effort is a testament to how much the community cares about one another. We are touched that so many people were willing to give their time or money despite rough economic times with rising fuel and food prices. We are touched by everyone’s efforts. Thank you.

This blog will detail Mandy’s treatment and travels in the coming weeks. Stay tuned.

$2,200 — Raised at the April 18 concert
$38,132 — Total raised so far
$11,868 — Amount needed for the $50,000 trip

$11,000 — Raised at the March 22 fish fry
$35,932 — Total raised so far
$14,068 — Amount needed for the $50,000 trip

Next fundraiser:

Shelter Revisited will be playing at Pete’s Inn (6528 N.W. Prairie View Road in Kansas City) at 8 p.m. this Friday, April 18. Hot dogs and chips will be served. There is a $5 cover charge, with all proceeds going to Mandy’s Mission.

$20,900 — Donated to Mandy’s Mission since December

$29,100 — Amount needed to reach $50,000, the cost of the trip

May 6 — The date we leave for China

2 — Number of fundraisers scheduled (See calendar)

1,625 — Number of unique page visits to our blog

On Feb. 2, Hermitage Christian Church held a concert and love offering for me. The band Murray & the Hickory Nuts played, and the church offered finger food and beverages. There was a good turn out, and in only a few short hours, we raised $1,300. The band sounded great, and everyone enjoyed themselves. Thanks to everyone who came out and supported me. The church plans to host another fundraiser in mid-March.

In other news, we have secured the trip to China, and I begin treatment May 10, 2008. We still need to raise more money to fund the trip, though.

–Mandy Burris