Stem Cells for Taylor

                                    What is happening now 
                         (See the back story further below)

I was fortunate to go to a conference in July. This was the first time I heard about a facility out of the united states that works in stem-cell therapy. When I returned home I immediately did some research on them and submitted Taylor’s medical information. To my amazement we received confirmation that Taylor was accepted into their in-patient program!

The cost of the treatment for Taylor is $37,200.00 which includes accommodations for 2 parents but not including traveling expenses. According to the acceptance letter the price is good for 90 days. We don’t have that kind of money right now. We wanted to reach out. Would you be able to help us raise enough money together to send him for this treatment, so that he may have a shot at improving his quality of life?

He is the most amazing and kind child. I honestly feel he is here to teach my husband and me something. Since a baby we have known he is an “old soul”. He loves his family the way a parent would love their children, has always worried about his siblings even if he got candy at a store "can I get something for my sisters?" he would say. He is a musician at heart, and such a charmer. A very sensitive, intelligent and caring young man.

Thank you for reading!
-Raphael and Nichole Deas, Jr.

                                        The Back Story
Taylor displayed no symptoms whatsoever leading up to this event.  The Friday before it happened we were at a beach swimming all day, then Saturday we went to another beach and swam all day, the Sunday it started he was at a family member's pool - and as usual Taylor was the last to get out around 5 p.m. to eat dinner.  He said his legs hurt and felt wobbly like cartoon legs.  When we arrived home, he couldn't feel his left big toe.  I gave him Bendadryl thinking it was a bug bite.  

The next morning 7/9/12 he couldn't feel below his torso, and he urinated on himself and didn't even know it.

We rushed him to our local hospital where they thought he might have guillain-barré syndrome.  They sent us via ambulance into Boston to Tufts University Hospital.  In their emergency room fearing it was the syndrome and didn't want it to keep climbing - they gave him steroids and a spinal tap.  To this date he cannot feel below his belly-button.

Tufts kept Taylor for 2 months - giving him 5 rounds of steroids, plasmapheresis, and IVIG.  At the end of August they determined Taylor had Transverse Myelitis and released us to an in-patient rehabilitation facility where he remained until October and then came home.

I grew unsatisfied with the vagueness of his discharge.  Never did I think our child would be leaving the hospital not being able to walk out with us.

I searched for Transverse Myelitis Clinical Trials and found a Dr. Pardo in Baltimore Maryland at John's Hopkins Hospital.  He was very interested in Taylor's case.  He asked if an Angiogram had ever been performed on Taylor.  I said no.  They had us come to Maryland in February 2013.  The angiogram proved Taylor had a spinal stroke, NOT Transverse Myelitis.

Since this trip, Taylor has had various physical therapies: water, transferring, walking with braces/gait belt, FES bike, stander, stretching.  He had physical therapy at Kennedy Krieger Institute where he had intense physical therapy that got his hip flexors firing just after 2 weeks.  He unfortunately broke his left Femur - in 2013.  In 2014 he broke his other Femur due to me trying to help him out of the ocean - the waves were too rough.  We were signed up for Re-Walk exoskeleton. He was approved until the 11th hour where they were worried about the torque being too rough on his bones.

He has specialists at Children's Hospital in Boston - the orthopedic doctor disagreed with the Re-Walk not taking Taylor to trial it.

Since the broken bones - he was put on heavy duty prescription Vitamin D and Calcium.  No breaks since then.

I was fortunate to go to a conference in July.  This was the first time I heard about a facility out of the united states that works in stem-cell therapy.  When I returned home I immediately did some research on them and submitted Taylor’s medical information.  To my amazement we received confirmation that Taylor was accepted into their in-patient program!

The cost of the treatment for Taylor is $37,200.00 which includes accommodations for 2 parents but not including traveling expenses. According to the acceptance letter the price is good for 90 days.  We don’t have that kind of money right now.  We wanted to reach out.  Would you be able to help us raise enough money together to send him for this treatment, so that he may have a shot at improving his quality of life?

He is the most amazing and kind child.  I honestly feel he is here to teach my husband and me something.  Since a baby we have known he is an “old soul”.  He loves his family the way a parent would love their children, has always worried about his siblings even if he got candy at a store "can I get something for my sisters?" he would say.  He is a musician at heart, and such a charmer.  A very sensitive, intelligent and caring young man.  

Thank you for reading!
-Raphael and Nichole Deas, Jr.

Donations

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  • Martha Teotonio 
    • $110 
    • 25 mos
  • James Cole 
    • $100 
    • 31 mos
  • Pamela Hayling Hoffman 
    • $100 
    • 31 mos
  • JoAnne Thompson 
    • $100 
    • 31 mos
  • Mekayla DosSantos 
    • $5 
    • 32 mos
See all

Organizer

Nichole Elizabeth Deas 
Organizer
Brockton, MA
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