Tuesday, March 29, 2011

Forging ahead...

Since the dodgeball tournament, we have been preparing for our next event at the Sierra Tap House this coming Thursday evening.  I have not had the time to update the blog until now...so sorry.

There are many steps we are taking to get Lila to her treatment.  We are currently filling out paperwork to get her a passport, and update ours, as well as collecting the proper information from LabCorp in order to complete the testing on Nora, Lila, and myself.  Lila and Nora need to be an HLA match (3 of 6 components) and blood type match for us to be able to use Nora's cord blood.  Please keep praying, and make the prayers specific...hahaha! We don't want the big guy above to get confused :-)   It will take two to three weeks to get the results of these tests, and then we can move forward with knowing which doctor to use and select a final date.  As for a date, we are hoping to make this happen one of the last two weeks of June, 2011.

Another therapy we hope to offer Lila through our fund-raising is a three week physical therapy program in Michigan.  This program is run through the Pediatric Fitness Center, and focuses solely on kids who have ambulatory issues.  They have been known to have kids walk in the door with a walker, and out the door without a walker!  The program is three weeks long, in which Lila would do physical therapy three hours a day, 5-days a week.  This, too, is a program that insurance does not cover at all, and is between $6000 and $7000 (depending on travel expenses).

Our reasoning behind wanting Lila to go to this program is that we want the stem cells to work at their optimal level.  The more Lila is moving and active, the better her circulation. This in turn means that there is a higher level of oxygen running through the body to feed those stem cells.  The more oxygen coming into the body, and brain in particular, the better results we will see from the stem cell treatment.  Why Michigan?  We are in constant communication with parents who have been to this program multiple times and have seen amazing results.  There is only one program here on the West Coast that we have found, and don't know any parents that have used it.  We would rather take Lila to an intensive therapy session that is "tried and true", than go to a therapy center closer to home and not see any results.  So, as we get closer to our $20,000 goal, we intend to move forward with our fund-raising and afford Lila all of the opportunities we can!  Thanks to you all, Lila will be given a gift that most children with disabilities will never see!

Sunday, March 20, 2011

DODGEBALL SUCCESS!

The Super Ninja Ball-Busters!  HAHAHAH!  I just laugh every time I see this photo!  I think that Gina must do Ty-bo,,,look at her form :-)

Matt dresses for the occasion
In January I was beginning to get the word out there about our journey, and getting so excited about all of the fundraisers I was planning, as well as the ones that were being planned out in community.  Matt felt as though he wanted to contribute and have a fundraiser that he and his friends would enjoy...the dodgeball tournament was born!  This event was just supposed to be something fun that would bring in a little bit of money for Lila, and turned out to be, most likely, our biggest success...raising $2600!

Best costume winners!  Deck the Balls!  hahaha


                           Laughter in the gym was so loud that it was contagious.   An unbelievable amount of fun was had by all, and a handful of people have made us promise that we will do this every year.  That energy has motivated us to put together a long-term fund for Lila and have a dodgeball tournament every year, supporting the therapies we would like to offer Lila, of which insurance doesn't cover.  Next year it will be bigger and better :-)
Hilarious....love it!
Go Team Lila!
Sierra Tap House always comes through :-)

They had the spirit of Rocky, but the game of Bullwinkle:-)



The Ball-Stars won the tournament!  They then turned around and gave Lila back their winnings...uugghhh, more crying...thanks again guys!

Lastly, Crossfit Initiative gave an incentive to it's members by offering a free month to one member who coordinates a team for the tournament.  There were two members who were in this drawing, and Dave Salls won.  Lucky for Lila, because he is as generous as all of the other Crossfit Members!  Dave has chosen to pay for his free month and give that money back to Lila!  Another $125 for Lila :-)  Matt and I have continually been humbled by the community support. 
(sorry we couldn't fit all team photos on the site, but thank you all!!!!!!!)
The generosity during the tournament was overwhelming.  The Ball-Stars won the tournament, and the 1st place prize was "double your money".  Upon Matt giving the guys their prize, they turned around and gave it all back to Lila!  Amazing kindness.

Not to mention the money that was thrown in Lila's little jar...that added $250 to her total...thank you!

We also have to send a huge thank you out to Chris who donated Subway sandwiches for the tournament!  Check him out at Kietzke and Moana.  Thanks so much Chris!!!!


 

Sunday, March 13, 2011

Fundraising update...

Well, there we were, January 2011, with our first $300 in funds raised for Lila's stem cell treatment.  The possibility for treatment looked so unreachable.  We felt as though we may be defeated, and that Lila may not be able to get the treatment that she needs to help her to move forward.  Little did we know that we have the largest support group that any one family could possibly have.  We couldn't have even imagined it!!!
Lila making a canvas creation!

Three weeks ago we hit $10,000, and since then have raised the number to $12,500!  What a surprise :-)  Here we are now, 2 1/2 months into fund-raising, and have been continually blown away by people's generosity, deep pockets, and willingness to help in any way possible.   Not only our circle of family and friends, but our community as a whole.

I want to share a story with you all of the amazing generosity, and reaching out, from our community.....
A designer friend of mine has a commercial rental property that she rents to an esthetician.  She was chatting with her renter/friend and mentioned that I was selling purses to raise money for Lila.  Christa, the esthetician, immediately said that she would like to display them in her "studio".  We had since gotten in touch, and scheduled to meet yesterday at her studio.  http://www.yelp.com/biz/the-skincare-girl-sparks

I walk in the front door, and there was another woman there chatting with Christa, so I apologize for interrupting, only to find out that she was there to meet ME.  What?  Well, Christa had then shared the story with Amber, the other woman...Amber read the blog and wanted to help, too.  So the three of us sit down to chat, and in two minutes of meeting these two absolutely amazing women, I am crying like a baby.  Amber begins to tell me that she is  Mary Kay consultant and has been trying to find a way to begin having "parties with a purpose".  She has now found her purpose....crying....she is going to donate a percentage of all of her parties to Lila from April 1st to July 1st, and if it goes well she will continue through the end of 2011.  Ok, I felt so blessed to even hear that news, but that was not all.  Amber and Christa would like to have a vendor fair at Christa's studio and all proceeds will go to Lila!  Uugghhh, I was then sobbing, and yes this was the first time I had met these two women.

Then Christa pipes up and says that she makes hand-made body scrubs and would like to make one called the "Lila Scrub" and give 100% of the sales to Lila.  What fun!  I can't wait to get a scrub, nor can I wait to have a treatment from Christa in the very near future :-)  She has offered a "pamper hour" to me so that I can relax and get away from the hustle bustle.  Could you ask for anything more?  What an amazing hour that was.  Goes to show how a community can come together to support one deserving little girl, and help her to have a better chance at a more "normal" and fulfilling life.

Back to the beginning of the story...I had just been thrilled that Christa was wanting to display the purses in her studio...that was all :-)  What a pleasant surprise to feel so loved and welcomed in our community!  Thank you Christa and Amber!

Thursday, March 10, 2011

Motivation is sure to bring success!

Great things have been happening here over the past few weeks :-)  Lila's motivation has sky-rocketed, and she is running with it!

Last week I picked Lila up from school and her teacher told me that she stood independently for 10-15 seconds...3 different times!  She has never stood independently before.  So, within the days following this "big event", she began to do it at home as well.  She must have tried to stand and balance on her own 30 times in a row.  By the end she still wanted to do it but was so tired that she was asking to read a book :-)  We are just thrilled with this progress!  Check out the video below of her trying to balance at the couch.
video

Another step forward....horse back riding.  Yesterday, for the first time, she rode on the horse all by herself!  This is sure to challenge her balance, coordination, and agility.  Recently she has been riding with an adult and holding her arms out to the side, while having her eyes closed, as well as riding backwards on the horse!  Again, this challenges her balance and support.  She is really turning a corner in gaining strength, motivation, and self-confidence.  At this stage, we are extra confident that the stem cells will help her to meet these goals that she is working so hard for right now!

Sunday, March 6, 2011

United States and the media

This post stems from the questions I have been getting since the 60 minutes episode aired this past week.  If you didn't see it, there was a story on stem cell treatments and the "doctors" out there that are scamming patients with degenerative diseases.  Diseases such as Parkinsons, ALS, and MS.  There truly is no known cure for these diseases, which is a long conversation we have had with one of the doctors we are considering working with.  Dr. Lopez was extra frustrated with the doctors, in Mexico in particular, who are telling patients that they can cure them of these diseases, which is not true.  His deepest frustrations come because stem cells truly are amazing and can help so many people in our world, and it is the scammers (like the doctors on 60 minutes) that are going to ruin this cutting edge medicine for everyone.


These researchers on 60 minutes made a bold statement by saying that stem cells help nothing more than leukemia and other blood disorders to date.  This must be their area of research, because if they looked much further they would see that this is not the case.  In my mind, this is what is wrong with our media today.  They continually fail to give us the entire picture, and if we all only listen to one thing we hear, how does this make us a better, more educated society?


How does this relate to Lila, you ask?  Well, Lila does not have a degenerative disease.  Cerebral Palsy (CP) is not a disease that gets progressively worse over time.  We continue to see progress in her, be it slow.  In patients who have MS or ALS, it has been seen that they will experience something positive for a very short period of time, and then continue to get worse again.  With CP, all changes that occur from stem cell treatments will be permanent.  As a matter of fact, kids have seen some absolutely amazing transformations from stem cell treatments.


I don't know if you all remember my first post where I attached a link about a child from New Zealand with CP, and they also interviewed a child from the US with CP?  Well, I have attached it below for those of you who missed it.  I have also attached a site that describes the benefits of stem cells in a child with CP, and brain altering studies with stem cells.
http://www.stemcelltherapies.org/umresearch/cerebral-palsy.html (these are not the doctors we intend to use, but their site holds some very valuable info)
http://www.healing-arts.org/children/cp/cpstemcell.htm#New Cells (studies of stem cells altering specialized regions in the brain)
http://www.3news.co.nz/Video/60Minutes/tabid/371/articleID/89418/cat/46/Default.aspx#video (original video from post)


For over a year now, we have been researching, gathering testimonials from parents, and taking a fine tooth comb to this idea of stem cell therapy for Lila .  We have come across some amazing resources that have helped us to weed out the scammers, have taught us to know what to look for in a doctor, to know what questions to ask, and to immediately spot red flags.  These 60 minutes doctors were charging $125,000 for an ALS patient to have a treatment.  If that's not a red flag, I don't know what is!  A typical treatment is between $12,000 and $35,000, and holds true from Germany to Mexico to China.


There is an organization out there that is called the Repair Stem Cell Institute, which is a free service to anyone interested in stem cell treatments, for a various causes/diseases.  This foundation has gone out there and legitimately hand-picked the scammers, while continuing to recommend the honest, truthful, and whole-hearted doctors to patients who are the right candidates.  They have even educated us on which doctors specialize in CP versus spinal cord injuries versus eye disorders.  These doctors have to go through a gamut of questions, prove which licenses they hold, and prove that they are approved by the FDA (within their Country).  They have helped us to weed out a lot of the bad guys, and get to the two final doctors we are planning to work with.


Lastly, and most importantly, have been the families from across the continent that we have been in touch with over the past year.  These are not families that the doctors recommended we contact.  These are families that I searched out through special needs groups on line, so they are unbiased, and consequently full of positive experiences!  They have shared their experiences with the doctors they have chosen to use, and lead us in the right direction.


So, thank you all for your concern.  We feel that God is leading us on the right path for Lila, and will continue to hold our hand along the way.

Wednesday, March 2, 2011

We can not thank you all enough for the overwhelming support!

I want to make mention of all of the creative ways that our friends and family from all over the Country are teaming together to help Lila.

1.  SEATTLE!  Annicka is our 10 year old niece, and is the most creative child I have ever met!  She wanted to help raise money for Lila, so decided to sell her version of the Ugly Doll and call them Lila Dolls (photos throughout this posting).  We have had multiple orders here in Reno, not to mention the orders that have been placed in Seattle.  That means that Annicka has now raised $240 for Lila's stem cell treatment.  Thank you Annicka...  We are very lucky to have you in our lives!
The 5 photos in this post are already taken, but if you would like to order a new one, let me know.  They are $15, and we do not know what you will get, as they are all different :-)

2.  CHICAGO!  A dear friend of mine sent me an email earlier this week saying that her son wanted to help out Lila.  It is his birthday soon and every year he chooses a charity for all of his friends to give to, in lieu of birthday gifts.  This year he would like for his charity to be Lila :-)  It warms my heart to know that children in our world today can be so wonderful and giving!  We have already seen a donation or two through the Jonah's birthday fund, which have helped Lila to get one step closer to her stem cell treatment :-)  Thank you to Laurie and Bill for giving this wonderful gift to their son, and thank you to Jonah for being such a great kid!!!!

My sister is contemplating putting together a vendor fair in the Western suburbs of Chicago, or doing something with her church.  Whatever it will be, Meredith, we thank you for your support!

3.  RENO!  We have the greatest church family ever, here in Reno.  The love and support we receive is insurmountable.  Many of our friends through church have been unbelievably generous with their donations, as well as the support they have provided in our fund-raising efforts.  First off, Crossfit Initiative, Ty and Soupha's gym on the south side of town, has put together 4 teams for the dodgeball tournament, is having a fund-raiser for Lila on April 8th at the gym, and (through a mutual friend of ours, and a dedicated gym member) we have received a very generous donation that was very selfless and special.  A kind act that we will remember for a long time to come.  http://www.fitnessreno.com/
***JKH photography is also on the road to giving!  Justine is donating 75% of all of her April photography proceeds to Lila!  She is offering three Saturday, 1-hour photography sessions, at three different local outdoor locations throughout the month of April, for only $75.  She is taking reservations for full photography sessions throughout the month as well.  Be sure to book your Spring photos now, as the sessions are filling up quickly! http://www.facebook.com/jkhphotography  or http://www.justinekathrynphoto.com/
***Dani Zavadil and Maridy Carpenter have jumped on board in helping to make a few purses to raise money for Lila.  This has been an unbelievable load off of my shoulders, as I was in over my head in purse making.  The purses they have made so far are adorable!  Be on the lookout for new purses to come :-)
***Mollie Connell is starting a magazine here in Reno called Urban Family.  The first issue will come out this coming May, and each issue will feature a local family and their story.  Well, Mollie has chosen us as her feature family for her first issue!  Her team came over for a visit a few weeks ago, and we sure enjoyed their company.  Looking forward to the Urban Family debut!!! http://www.urbanfamilymagazine.com/
***Patty Orr, a dear friend of ours is a sign language teacher and has offered to have a sign language class sometime this summer.  It would be no cost to the attendees, just donation based, and fun for all of the kids!
***John and Carla Bennett own a Martial Arts Academy and are planning to have a kick-a-thon with all of their members in support of Lila.  I can't wait to share photos of Lila kicking while in her walker :-)http://www.teammartialartsacademy.com/
***Kim Allcock and Kimberlee Orenstein are donating space at Yoga Loka, this coming Saturday the 5th, for us to have a family yoga day for Lila!  Bring the kids and make a donation to Lila! http://www.yogalokareno.com/
***Stand Up Paddle Boards, a local company our friend Doug owns, has offered to have a raffle/auction at the annual paddle board race in Tahoe late summer.  They will give away a kids paddle board with something specific to Lila on the board (her footprints, or something of the sort).  FUN!
***Great friends of ours own the Sierra Tap House, Old Bridge Pub, and Legends here in Reno.  They are helping to sponsor an evening event at the Tap House on March 31st with live music, silent auction, 50/50 raffle, and 30% of the profits for the night will go to Lila.  Thanks to Zach, Mike, Charlie, and Caleb!  http://www.sierrataphouse.com/
***Lastly, the Washoe County School District is donating the use of the gym at McQueen High School for our dodgeball event on March 19th (thank you Eric!).  Matt thought we would maybe be able to rally 10 teams for the event, however it looks like we will have more like 15-16 teams.  This will definitely be a fun event, and if you know of anyone that would like to be involved, call Matt at 287-4666.

Whew, that was long winded :-)  If I missed anyone I am so sorry.  I will catch you next time around, as this will not be the last thank you post I publish :-)

Thanks to you all!