Sunday, January 30, 2011

Fund-raising to date....

Thanks to a dear friend here in Reno, we have just hit the $4500 mark!  Yay!  Thanks to all that have given their support, not only through contributions, but through time, organizing fund-raising events, purse making, graphic design, blog creation, and so much more!

The "LilaDoll"...isn't it adorable!
Our dear niece who is 10 years old has decided that she wants to be a part of the fund-raising efforts to help Lila.  She is an amazing artist, as all of the ladies are in Matt's family, and makes these absolutely fabulous "Lila dolls" by hand.  They are her own artistic take on the Ugly Doll, and are so much cuter!  So, she will be making them per order.  See the info below:
-  $15 per Lila Doll
-  Each Lila Doll will be creatively hand-sewn, and each will be different.
-  All proceeds will go to Lila
-  If you would like to donate more on top of the cost of the Lila Doll, the donation above and beyond the $15 will be tax deductible.
-  This is a great gift for a niece, nephew, baby shower, daughter, friend, and even for yourself :-)

If you are interested, please drop me a note and I will place the order for you!  Thank you to Annicka for this great idea!

On Thursday evening I went over the the local Crossfit Gym (that Ty and Soupha own....which is absolutely awesome and is changing peoples lives by the day!) and made a display of Lila's purses and paintings.  If you see something you like, drop by the gym (9410 Prototype Dr. #12) or let me know and I will get it to you.  The next set of paintings and purses will go up on the blog for sale within the next week or two!  Be sure to check back to the site for them!

Wednesday, January 26, 2011

Getting back to the basics

Thank you to Cindy for sharing her story with the rest of us.  Spina Biffida affects the spine, whereas cerebral palsy affects the brain, nevertheless, what I wanted you to all see was how powerful stem cells can be, spine, brain, taste buds, muscles, whatever!  Danielle has made amazing progress in so many ways...she couldn't feel her feet/legs before the treatment, couldn't taste anything, had no balance or coordination, and could not stand independently at all.  Now she has all of these things and so much more.  She has a chance at a better life through childhood and adulthood, with more independence, confidence, and self awareness.  Giving a child these things, that may seem so small for us, is soooo big for them!

On another note, I have been in the depths of stem cells for about a year now, and forget that not everyone has the knowledge base that Matt and I do at this point.  So, thanks to a local friend, I am going to get back to basics...

Stem Cells are cells that have the remarkable potential to develop into many different cell types in the body during early life and growth. In addition, in many tissues they serve as a sort of internal repair system, dividing essentially without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential either to remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell.

They are unspecialized cells capable of renewing themselves through cell division, sometimes after long periods of inactivity. Under certain physiologic or experimental conditions, they can be induced to become tissue- or organ-specific cells with special functions. 
All stem cells—regardless of their source—have three general properties: they are capable of dividing and renewing themselves for long periods; they are unspecialized; and they can give rise to specialized cell types.  


1.      Embryonic stem cells - are harvested from the inner cell mass of the blastocyst seven to ten days after fertilization.
2.      Fetal stem cells - are taken from the germ line tissues that will make up the gonads of aborted fetuses.
3.      Umbilical cord stem cells - Umbilical cord blood contains stem cells similar to those found in bone marrow.
4.      Placenta derived stem cells - up to ten times as many stem cells can be harvested from a placenta as from cord blood.
        5.   Adult stem cells - Many adult tissues contain stem cells that can be isolated

Embryonic and fetal stem cells have proven to cause tumors in a few cases.  These cells are considered very immature and, in some cases, can not seem to stop growing once the treatment has taken.  This does not happen in everyone who accepts these cells, like an amazing woman I have spoken at great length with who has had six treatments of fetal cells.  She gets checked for tumors/growths every six months and is free from harm to date.  I am in awe of her strength and courage, as she has undergone much triumph in her life.  I won't go any further, as she may tell her story to you all on our blog.  If not, I want to consult with her first before I go on about her personal life.  Stay tuned :-)

Umbilical Cord Blood cells have shown no harm in the 20 years they have been used outside of our country.  There was a study done 10 years ago (I believe) involving 300 children, and not one of them had any issues (growths, reactions, etc.).  Each one continues to live a healthy life to date.  

Placental stem cells are very new.  This was something they were just talking about a year ago when we saved Nora's cord blood.  Now it seems as though the researchers have gotten a bit further in knowing that the cells are very powerful.

Adult stem cells are cells taken out of your own body.  There are two ways this generally happens...(1) a very small liposuction-type machine is used to gather the stem cells from your adipose fat, in your belly area, or (2) the cells are taken surgically from your bone marrow.  Neither of these cause harm, as they are one's own cells.

Through all of the research we have done, we are going to use one of three cell types for Lila.  First, if possible, we would like to use Nora's cord blood (umbilical).  Second, we would choose to use donated umbilical cord blood from a healthy baby/mother.  Third, would be to utilize Lila's own adult stem cells.  It all depends on which doctor we decide to use, as they both have a bit of a different philosophy. 

This is a very hard decision for Matt and I, as we are making a decision that is based upon someone else's body.  This is the reason we have done such extensive research, and have searched out multiple families who have used stem cells to date.  Now we have done enough research to know that this decision we are making is not going to negatively impact our child, and the safe route is the route for us.  When Lila gets older and can decide for herself, she is more than welcome to have another treatment and use whichever types of cells she would like at that time.  We will support her decision whole-heartedly, as stem cells will have come so far....doctors may actually be using them in the States by then (hahah)!  

Monday, January 24, 2011

Danielle Smith Stem Cell Journey

Hello!  My name is Cindy and my daughter, Danielle, was born with Spina Bifida.  She is four years old.  Due to the Spina Bifida Danielle is partially paralyzed from the waist down.  She was not able to stand or walk unassisted and does not have bladder control.  Danielle is mobile with the use of a walker.

I have done intensive research on umbilical cord blood stem cells (UCB) over the past four years.  We did save Danielle's cord blood from her birth.  Unfortunately, no one in the United States would administer her stem cells to her because it has not been done before for Spina Bifida.  When I saw the tremendous progress of children receiving UCB for CP at Duke University, I was sure that it was the answer for my daughter.  This was when Danielle was two years old.  At this same time I became aware of companies in China and Mexico offering donated UCB stem cells.  This was when we began to fund-raise.  It took a year and a half and many fundraisers with many generous people from our community to raise the funds.

We had ups and downs in our journey that can be read in detail on  In the end, we were put in touch with Dr. Lopez from the Regenerative Medicine Institute in Mexico.  After many discussions about the details, I felt comfortable proceeding with Dr. Lopez and his group.  Dr. Lopez was able to get approval from the Mexican government to use Danielle's own cord blood stem cells for Spina Bifida.  The blood bank felt that there would not be an issue with shipping the stem cells across the border and we proceeded.  The transplant liason at Cord Blood Registry also was extremely detailed in her discussions with the lab personnel at the hospital.  She felt comfortable in their knowledge of performing stem cell transplants.

Dr. Lopez met us upon our arrival at the hospital and helped us to get checked in.  The hospital room was very nice, nicer than the hospital rooms in which I gave birth in the states.  The room had a sitting area and cable tv.  We were then introduced to Dr. Perez, who was our liason at the hospital.  The doctors answered any questions that we had.  The next morning we met the two neurosurgeons.  All of the doctors were attentive and answered any questions.

Dani received 70% of her stem cells directly into her spinal cord and 30% through an IV.  After the procedure, I sat with her in the recovery room until she woke up.  Danielle had her temperature taken during the remainder of the day and night and had no adverse reactions to the procedure.  She was walking the halls the next day and was released.  Our experience was wonderful in dealing with Dr. Lopez and the Regerative Medicine Institute.  The doctors were very professional, the hospital was very nice, and the food was good.  It was an excellent trip from start to finish.

As to Danielle's progress:  We have been back from Mexico for 10 weeks.  At two weeks post procedure she had more feelings in her legs and feet.  At five weeks: her taste buds (which were damaged as a baby) were repaired.  Danielle can now taste food and loves it!  Her balance is improved.  At two months: she could stand for 40 seconds and started to initiate her first step.  On December 27th, she repeatedly took one step by herself.  At three months: Danielle can stand for almost a minute by herself and she can now take two steps.  We expect to see the biggest results from 3-6 months post procedure, and therefore, are very excited about the coming months.  Finally, based upon Danielle's improvements to date alone, we would absolutely have the procedure again!!

Saturday, January 22, 2011

Horseback Riding and Disabilities

I had to share this story, as I received it today after I just posted about Lila on her first riding lesson....
Look closely...
Yup.  No arms.  Her name is Bettina Eistel and her horse is Fabuleax 5.
What is even more compelling than the fact that she can brush her horse with her feet, is that she competes, very well, at the Paralympics in dressage.
Bettina didn’t just overcome her disability, she walloped it!
(Kinda makes me feel ridiculous for complaining about anything having to do with just about anything…)
Thalidomide.  (I wanted to read her book but it isn’t translated into English and I cannot read German.  I wonder if a Kindle could translate it?…)  Anyway, she was born in 1961 in Germany , with no arms due to the drug, Thalidomide.
Her book
What is Thalidomide?  Thalidomide was a drug they gave pregnant women before it was known that it caused birth defects…  Hence, Bettina was born without any arms.
When I was too little to understand manners, I can remember my mother telling me not to stare at kids I would see who had birth defects.   She would shake her head and just whisper, “Thalidomide”.   I remember being very appreciative that I didn’t have that kind of a birth defect.
Bettina doesn’t let her disability stop her.  After all, this way of being is all she has ever known…
As an aside, another disabled Olympian was explaining the difference between being born with a disability versus being born “whole” and acquiring the disability.  This concept is an interesting topic.  You probably can come to some of your own conclusions here.
Bridling... look at him drop his head.
Anyway, as a small child, Bettina learned how to use her feet and toes as her hands and fingers.  As a youngster, she started in horseback riding lessons.  (Thank goodness her parents supported her and let go of their fears around this.) She wears riding boots with cut-outs in the toes so she can have ‘hands’ (imagine how cold her toes must get … and how often they clip a branch or a fence board – ouch!).  She can saddle, bridle, hose down, wrap, blanket and do just about anything else that is needed for her horse.  And, she rides by steering with her legs and holding the reins in her mouth.  IN HER MOUTH.  Try that… I tried to hold my brush in my mouth while braiding my girl’s hair and I ended up drooling all over the place in about a minute.  I have no idea how she does it.  Amazing.
Oh, and besides all those horse riding feats, she can text, write and put on mascara with her toes!
Hmmmm.  I’m starting to feel sheepish for complaining about anything…
They say Bettina is a master at hose water fights!
“After highschool in 1979, Bettina studied the History of Art, Archaeology and Ethnology in Hamburg , followed by an eight-year study of psychology. During her psychology studies, she  participated in a project with Hamburg ’s home for children. In 1989 she completed her studies with a diploma and has since worked as a graduate psychologist in a Hamburg counseling center for children and family therapy.”
I really couldn’t find much information on her coaching (Her coach Franz-Martin Stankus) or how she learned to ride.  But, I did find out that she:
“Eistel was formerly Vice-Europe and Vice World Champion (two silver and bronze at the European Championships in Portugal in 2002 and three silver at the World Championships in Belgium in 2003) and won two silver and one bronze medal at the 2004 Paralympics in Athens , she won also three times the German championship.  As the most recent successes are the bronze medal in the required tasks of the individual competition and the silver medal in the team standings at the 2008 Paralympics in Hong Kong .”
Not bad even for a girl WITH arms…
With her dressage medal
You have to really think about the kind of horse who would let this kind of a rider be his partner.  Really… what temperament is needed to perform at high level dressage as well as take care of a disabled rider?  Wow.  I wish I knew if they looked high and low for him… or if they simply trained a good horse to understand this rider?  (I need to read her book.)  I mean, did they find a horse and say to him that this is the way we are going to do it now?  Or, does the Fabuleax 5 ‘know’?  I often hear that certain horses are much more gracious with disabled riders than with regular riders.  I know that my Gwen is much nicer to children than to me… I wonder how that happens?  Is it the horse or the quality/feel/spirit of the disabled rider/child that effects the horse?  Dunno.
Taking a treat from Mom
Bettina says she trained her horse via voice commands, head movement and leg aids.  Funny, I bet hardly any of us would think it was even possible to ride a horse without arms.
From where I sit, I would like to be in the presence of  the wonderful Fabuleax 5.  He is a saint in my book.  Fabuleax lets Bettina ride him in the only way she can… with the reins in her teeth and the other set of reins between her toes.  And, he does his job.  Simple.  Gosh.  Impressive.
If you notice in the photos, he lowers his head to be bridled and to be brushed.  Atta boy!
Beautiful boy
Bettina also landed a gig as a Talk Show Host.  With a weekly show on German TV station ZDF, Bettina is something of a media star.  They say her popularity is because of her engaging and optimistic personality… but one cannot ignore her amazing ability to do everything, literally everything, with her feet..
Bettina as talk show host
I wanted to bring this story to you because I think sometimes we give up too easily.  Or maybe it is just me… maybe I think I give up too easily or don’t push through my/my horse’s issues or don’t get over myself/my fears or don’t put as much effort/time into training my horses as I could.  Reading about Bettina was a good shot in the arm for me…
I sure don’t feel like making any excuses or complaining…
I cannot even imagine folding the laundry with my feet, let alone living 24 hours without my hands.  Wow.  Very inspirational.
What a great team!

Friday, January 21, 2011

Lila and Devis...her new friend

We are so looks like Lila has a new best friend!  Thanks to our friend Pam, Lila has been able to start horseback riding lessons through the Washoe County School District.  She had her first lesson on Wednesday with Devis, the horse, and couldn't stop asking for more.  That smile did not leave her face the entire time!  Devis rode calmly around the "arena" and then began to trot.  As Lila rounded the corner, I wasn't sure if I should have expected a smile or a cry.  Turns out she was laughing as she was bouncing up and down :-)  So much fun and so great for her balance and strength!  Thanks to Pam and Sue :-)

On another note, I have been meaning to post Lila's first set of paintings to go up for auction, but there is something that is stopping me.  We have found out that if there are goods exchanged during the fundraising process, then the donation is not tax deductible through Bay Street Helping Hands.  This has thrown me for a loop, as my vision for the auctioning of Lila's paintings may not be the right way to go.  Maybe it doesn't matter to you all, and you would rather have a painting than the tax deduction?  I will think a bit more about this and keep you all posted...ideas welcomed :-)

As for the purses, these will not be a tax write off, unless you would like to donate above and beyond the cost of the purse.  The donation above the cost of the purse will be tax deductible, and you will get a letter from bay Street Helping Hands for that amount.

Lastly, we have three or four fundraising events lined up for Lila, and I will post actual dates within the week.  Our friends, family, and community have been such a huge support, for which we can not thank you enough!  Attached is a link to a "letter" my cousin wrote about Lila and our family.  She then posted it to her entire community, and the Lila fever is spreading :-)  Thanks Lindsay, I love ya!