Help Dani Smith Fundraiser

Sorry that I haven't posted an update since October, but unfortunately Danielle had another major setback.  A cyst in her spinal cord regrew and she lost the feeling and function in her legs and feet once again.  On February 7th, DANI HAD HER 7TH BRAIN SURGERY AND 3RD SPINAL CORD SURGERY IN 18 MONTHS.  

It took several months to figure out why she lost the feeling and function again.  We removed the braces from Danielle's teeth 5 months early to get an MRI of her head and neck.  It showed no obstructions, she has a bulging and degenerative disc at C5, but it did not seem to be interfering with the spinal fluid flow.  The neurosurgeon did not know what else to do.  

Finally we got in to see another neurosurgeon who did a complete MRI from her head to the bottom of her spine.  The MRI of her lower back showed that Dani has a giant arachnoid cyst inside  her spinal cord that regrew since the last surgery and was pushing on nerves and her spinal cord.  This cyst has nerves inside of it and she has had it since birth, so it can not be completely removed.  When Dr. Tomita operated on her in January of 2019 he reduced the size of it and cauterized it to prevent it from refilling.  This was why he did not take an MRI of her lower spine when she started having neurologic issues because it wasn't supposed to grow in size anymore.  We took the new MRI to Dr. Tomita a few days later and he immediately scheduled surgery.   First, she had brain surgery to see if the shunt tubing in her head was blocked (it wasn't) and then the cyst was reduced and cauterized again and her spinal cord untethered again. 

Dani is now 3 months post op and the situation is the same as last year.  Similar to the opening video from last year (above), Dani has regained very little feeling in her legs or feet.  She is even weaker in strength because each time that she has this surgery she is weaker going into the surgery than the time before.  Dani is also dealing with tremors in the legs coming and going.  Last year Dani had surgery in January and the stem cell treatment was in April.  Within 2 weeks of the treatment she regained 100% of the feeling in her legs and feet.  We pray that another stem cell treatment will have the same effect to repair and reconnect the nerves damaged in the surgery.  We again need to raise $20,000.  The current total from the previous fundraiser is increased by $20,000 to account for the funds needed.  We wanted to use the same Gofundme page so that people can read the updates about Dani's journey from the last year. 

We know that this is a very bad time to have to fundraise.  If anyone has the means to help Dani once again, we are truly grateful.  Also, if anyone or your kids have extra time on their hands and would like to help fundraise for Dani, your help is appreciated.  

This has been such an emotionally and physically difficult time over the last couple of years for Dani and our family.  But, it's time to take a deep breathe, suck it up, and begin the healing process once again. 

We love prayers!!!

Thank you!

Cindy & Jeff 


***Below is the initial posting from 2019

The situation is bad.  After having a tethered spinal cord, twice, which was not treated in a timely manner, Danielle is left paralyzed and unable to stand or walk.  We need to raise funds for a stem cell treatment as soon as possible; time is of the essence to repair the damage to her nerves. 

Danielle was born with Spina Bifida, but was always able to move her legs and feet from birth.  She had sporadic feeling, but gained full feeling including hot and cold from her previous stem cell treatments which was made possible through the generosity of many friends and family.  Danielle performed physical therapy almost every day of her life in order to be able to walk independently.  By last Spring she was totally independent in caring for herself as well as walking independently in the house and outside the house just using straight canes.  Dani loved to make herself scrambled eggs in the morning and was so proud of how much she had achieved. 

In mid-June of 2018, Dani began to hold onto the walls when walking.  I contacted the neurosurgeon that something was wrong.  It took two months for the neurosurgeon to operate and only after we got the chief neurosurgeon involved.  Dani had gone from walking to not being able to stand before surgery was performed.  She was doing well for a month and was up weight bearing by walking with a walker, then she collapsed.  This was followed by a brain surgery shunt revision, then an exploratory brain surgery on her shunt.  Dani still could not stand.   The first surgeon refused to acknowledge that she might be retethered and said that total paralysis was her new norm.  She remained in this state for 3 ½ months before the chief neurosurgeon again intervened and he himself performed a second untethering surgery.  Dani also had another brain surgery that replaced her shunt valve at the same time as the spinal cord surgery, a double whammy.  The reason that Danielle is paralyzed today is because a second surgery did not happen for 3 ½ months and resulted in damage to her nerves.  Over this timeframe, we took Dani to other neurosurgeons at other hospitals, including the Mayo Clinic, and were turned away.  It seems that no one wanted to go against the first neurosurgeon.  As a result, Danielle is now mostly paralyzed.   

It has been seven weeks since Danielle’s double brain and spinal cord surgery (2 spinal cord and 3 brain surgeries in 6 months).  She has not gained any more feeling in her legs or feet.  She also has constant leg tremors that she never had before.  Dani’s only hope to help repair the damage to her nerves is stem cell treatments.  Based upon her past results, we are very encouraged that this can help her.  She most likely will need more than one treatment.  We are going to concentrate on the first treatment with the same company that gave Dani her last two treatments with great results.  This treatment is $20,000, not including airfare and hotel.  Time is of the essence to repair her nerve damage.  Please help Dani fight her way back to independence once again.  This is such an unfair situation, but Dani is facing it as she has always faced her life, with a huge positive attitude.

Thank you!

Jeff & Cindy