Hello everyone! I have been a bad updater for Julies friends and supporters! Sorry for the lack of updates, but unfortunately we don’t have much to report.
We have been home for six weeks, and have yet to see any major improvements. Julies speech is getting somewhat better, so I have been told by some people! I know, baby steps.
We are still in the window that the stem cells need to do wh…at they do, as far as maturing and splitting and “repairing’ the tissues that have been damaged. That window is about 90 days. So we still have 40 or so days since her last stem cell treatment.
Julie has been going to the gym, Anytime Fitness, thank you Debbie V. for donating that membership to Julie. She does the seated olyptical machine for 20 minutes, then we do the weight machines along with some step exercises.
We have numerous appointments coming up in the future with the Cleveland Clinic, as well as University of Michigan for some other possible diagnosis. Will keep you posted. Thanks again for all the support, and continued prayers for Julie!
Now that the weather is getting fall like, don’t forget we still have the Rockin For Julie hoodies available!! Plenty left!! Order yours today!
During the last few weeks in China the internet connection (or should we say the lack of a reliable one) kept Scott from updating us as much as he would have liked to. He and Julie are home now. Here’s the latest from Scott.
AAAHH!!! The great United States of America!! Unless you have traveled to the other side of the globe, you know what I mean. We, as American citizens, don’t know how good we have it!!
It is a shame that we have to travel over 7000 miles to get medical treatment in a place where 90% of the people don’t know what a toilet bowl is!!
Julie and I have returned from our FIRST trip to Hengyang, China for stem cell treatments. I say first, because we will go back for a second and possibly third treatment.
We arrived home late Thursday night, and yesterday was a day for us to get caught up on everything!
I would like to thank everyone, again, for all the support that you have shown Julie!! We never could have made it to China without the help of all of you, that supported her in one way or another! We still have t shirts available as well as hoodies! Go to our webstore if you need one or more.
A quick update on Julie! She was given four treatments of blood cord (cells taken from an umbilical cord AFTER a baby is born)stem cells. The first two were by IV and the last two by lumbar puncture (LP)! We believe she got better results from the LP.
Although we didn’t get the WOW results, her speech has improved a little bit, and everything else will come in time. The cells will mature over a period of 90 days and hopefully she will get better each day.
We will start a regular physical therapy schedule this week to improve her strength, coordination, as well as her balance. This will be important for future treatments as the Chinese don’t mess around when they do PT!!
We are hoping for a return trip in the late fall. As some of you may know, China does not allow FB, and the internet is slow and hit and miss. That is why you haven’t seen any posts from us.
Sheryl did a great job posting what she could as our interactions were the best I could do. I will be posting more about our journey to China, but I will end on this for now.
No matter how bad you think you may have it, when you bitch about something so small, know this we have it very, very good here!
Earlier today Julie had her third stem cell injection. Full treatment is a series of four injections.
We were hoping to see some improvements beginning after the second injection, but so far they have not come. While this may feel like discouraging news, keep in mind Julie is only half way through a full cycle of treatment.
To unwind from the hospital routine, Julie and Scott have been enjoying the hotel pool. Julie was very excited to float around a bit and get some sun and fresh air!
They send their well wishes to everyone and ask that you keep them in your prayers.
Julie had her first stem cell injection on Monday, June 10th. The rest of this week has been filled with tests, physical therapy, and traditional Chinese medicine. So far, there has not been a change in her condition, but it is too soon to expect to see results. The full treatment consists of 4 injections.
Julie and Scott have met a new friend, Mamut, from Saudi Arabia. He is also undergoing treatment. Mamut started treatment 2 weeks before Julie and had some improvements after his second injection. Definitely encouraging news to hear. Julie’s second injection will be Saturday June 15th.
When I spoke to Scott (late Thursday night here, early Friday morning there) he and Julie were planning to get away from the hospital for a few hours in the morning and take a walk around the neighborhood. After that, they head back to the hospital for an early afternoon acupuncture appointment.
Julie and Scott send everyone their love and thanks. Please keep them in your prayers.
It is with a heavy heart that we make this post.
The winner of the Harley-Davidson, David McQueen of Redford MI, was killed last Saturday night when he hit a deer while riding the bike. The accident occurred less than a week after he picking the bike up.
According to a family member of David’s a friend purchased the winning ticket as a gift for him and he was elated that he won.
We offer our deepest sympathy to David’s family and friends, and pray that time and many good memories lessen their overwhelming feelings of loss.
We have delayed posting this for several days to allow us to notify Julie and Scott directly, rather than having them reading it on the website. As you would expect, they are deeply saddened, and pass along their condolences to David’s loved ones.
You’re in a cab, somewhere in the middle of China. The volumn of traffic is amazing. Car horns are regularly used in place of turn signals. The pace you are moving is agonizingly slow. It’s been a long day few days of travel and you all just want to get to your hotel.
With the exception of traffic noises the cab is silent. Everyone you’re traveling with is tired. Conversation has stopped. When your interpreter’s phone makes a noise, you naturally glance at it. To your dismay, you recognize the picture on the phone. It’s the logo for a band from home. A band you had seen live just a few weeks ago. A band that helped make your trip to China a reality.
If this were a big name group it wouldn’t surprise you. But they aren’t, yet. They’re still more regionally known. Until a few months ago you hadn’t even heard of them. Now you know them well. You were listening to them on the way to the airport, and you’ve just seen thier logo in a very unlikely place.
That’s exactly what happened to Julie & Scott Legas. During their travels they recognized the picture on their interperiter’s phone as the Mike Leslie Band’s logo. The interpreter’s friend, who lives in Canada, emailed her a link to a Mike Leslie song. She liked it so much she downloaded it. She listens to it constantly, and with good reason. They’re fantastic musicians and really good people!
For those of you who don’t know about the Mike Leslie Band and how they helped get Julie to China here’s the back story:
Julie has a very rare form of Cerebellar Ataxia, a disorder that attacks your ability to control your motor skills. She has undergone all the treatments that are available in the United States with no success. Her hope now lies in getting stem cell treatment in China. The cost of treatment, travel to China, and follow-up care is enormous, so Scott (Julie’s husband) and some friends started organizing fundraisers.
The premier fundraising event was a concert on May 18th called Rockin’ for Julie. It took place at the historic St. Andrew’s Hall in Detroit. Several fantastic bands performed that night including Sponge, Ty Stone, The Infatuations, and the Mike Leslie Band. These bands didn’t just entertain the crowd, they made the concert about Julie. They gave of themselves selflessly and put a smile on Julie’s face that was priceless. They reminded us why we were all there.
The concert, along several other events, have made it possible for Julie to get treatment in China.
Longfellow wrote that ”Music is the universal language of mankind
This Friday, June 14th, 2013, Mike Leslie Band will be physically crossing the Detroit – Windsor border for one of their most important shows ever. They will meet with and play for the senior A&R of Universal Music Canada at the Dominion House in Windsor, ON.
If you are able, please attend to help support them as they have supported Julie. Cover is only $5. Click here for details on this event.
Mike Leslie Band is also part of an amazing new documentary called “Border City Music Project”. It’s about music bridging the gap between Detroit and Windsor. Check out the trailer at http://
When you hear stories like Julie & Scotts, you realize how connected we really are. It truly is a small world after all.
You may be aware that the Chinese government does not allow access to Facebook in China. Julie & Scott can access this website while there. Feel free to leave messages and well wishes for them by leaving a reply here.
Since many of of Julie’s friends and family have left well wishes on the Julie’s Journey facebook page, we are copying & pasting them here so they can be viewed by Julie & Scott.
With the hustle and bustle of the last few weeks’ fundraisers and last minute details, we (the Rockin’ for Julie team) didn’t realize that the location for Julie’s treatment has changed from Zuhai, to Hungyeng China. Although the location changed it is still the same treatment she will be receiving. This change allowed Julie to schedule her treatment sooner than it would have been in Zhuhai.
Traveling has been quite an experience. Their trip to Hungyen were not as straightforward as we originally thought. There has been a flight from Detroit to Beijing, then an overnight stay. Then next day they left took another flight and were supposed to get on the Bullet Train (that same day) to reach Hungyeng.
That flight was delayed, so they had another overnight stay and got the train the next day. The final part of the trip was by car. Traffic in major cities is unlike anything you may have seen in the US. It can take hours to get just a few miles. I believe Scott said it took about 40 minutes to go the 10 miles from the train to their motel.
Here’s the latest message from Scott:
“Ni Hao (pronounced Nee How – Hello in Chinese)
We are in Hungyeng China!!
The people have been so hospitable, very helpful, fun to interact with.
Man what country!! We have put a whole new meaning to planes, trains, and automobiles!! Julie has done exceptional, so far, considering all the travels and challenges we have had to overcome! Traveling in a foreign country, healthy can be confusing, try it with a person in a wheelchair, four suitcases, a brother-in-law and mother-in-law……overall it has been “Julies Journey” , and living true to the name!!
We have done a battery of tests the Chinese way, and we will start the stem cell treatments on Monday.
We will be in touch soon!!
Love ya!! “
Julie & Scott can not access Facebook from China, but they can access this site. Please leave messages and well wishes in the comments below. Due to the large amount of spam comments this website receives, your posts will have to be approved before they will show up in the comments. I will attempt to do approvals at least twice daily, so please be patient. Julie & Scott will get your messages.
Another brief update from Scott & Julie
“Almost to the hospital. What an unbelievable journey this is turning out to be.”
I thought they were scheduled to arrive at the hospital a day ago. Perhaps travel plans changed a bit. I’m sure there will be some great story to be told when they get home.
We’ll keep you updated as more comes in!
Julie and Scott are in China! The first part of their journey was a flight from Detroit to Beijing. They spent a day in Beijing, then had another flight from Beijing to Zhuhai.
Facebook can not be accessed in China, so Scott will be sending email updates that we will be posting here and on the Julie’s Journey Facebook Page. Here’s their first message sent while they were in Beijing:
” Hey there! OMG! CRAZY! Beijing is wild!!! Awesome flight!! Big travel coming up tomorrow!! Will keep you posted for the website. Let the supporters know all is well and Julie is doing great!!”
Julie & Scott can access this website from China, so please feel free to leave messages and well wishes in the comments below. Due to the large amount of spam comments this website receives, your posts will have to be approved before they will show up in the comments. I will attempt to do approvals at least twice daily, so please be patient. Julie & Scott will get your messages.