Kenny's Stem Cell Treatment Fundraiser

My husband and I (Ken and Molly Deaton) are starting a GoFundMe for our son, Kenny. Kenny is 7 years old and is considered severely autistic, developmentally delayed, with complex medical disability. He has serious self-injurious behaviors (SIBs) and needs substantial support in daily living. The serious care and support he requires will almost certainly be lifelong. The severity of his Autism makes daily life very challenging for him, and things that most people consider simple tasks are huge feats for him. In addition to Autism, Kenny suffers from several other rare and debilitating conditions such as chronic neutropenia and eosinophil esophagitis. Diagnosis of these things has been difficult and led to Kenny needing to be poked, prodded, tested, and anesthetized more than most other children.

We spent two years raising funds and saving money to be able to take Kenny to the Stem Cell institute in Panama last August. The results of that stem cell treatment were nothing short of miraculous. For 7 long years Kenny was completely non-verbal and had very limited communication skills. One month after his stem cell treatment he started talking. Kenny said “Dada”, “Mama” and “I love you” for the first time at 7 years old, which is something we never thought we would hear. Even now, it is so surreal to hear his sweet voice as he talks, reads, and sings. His vocabulary has exploded, his imitation and gesturing skills have developed in leaps and bounds, and all of his teachers, therapists, and doctors have been blown away by the progress and change they have seen in Kenny since the stem cell treatment. Kenny’s self-injurious behavior has been reduced drastically from thousands of SIBs per day, to 0-50 per day. This change has allowed Kenny to participate in group activities, experience more events in our public community, and to develop relationships with his peers. In addition to these developments, Kenny’s neutropenia has stabilized, and his levels have been the closest to normal than they have been in his entire life. This improvement has been hugely impactful to his immune system, and his ability to fight infections so much more efficiently. Prior to this stem cell treatment, Kenny would experience medical events requiring hospital visits every 2-3 months, on top of countless doctor’s visits. Since his treatment, he has only been to the doctor once! And no hospital visits! This treatment has changed his life so significantly, drastically improving his quality of life.

There's a phrase: "It takes a village" to raise a child, and right now our family is calling on our village for help and support. Our need for assistance in helping better our son's life outweighs our guilt and embarrassment for asking for help from friends, family, neighbors, and strangers.

We have created this fundraiser to raise monies for our son to return to The Stem Cell Institute to receive another allogeneic mesenchymal stem cell treatment. While the changes from the treatments don’t regress, after 6-9 months the stem cells naturally die off. A subsequent treatment can exponentially improve Kenny’s life, building on the developments and improvements from the previous treatment. While the “gains” and changes we have seen have been mind-blowingly amazing, Kenny still has many challenges in his life. Seeing the healing that is possible with this treatment, we will not stop doing whatever we can to get him a subsequent treatment, and to spread the word about this life-changing opportunity for those who have faced the seemingly insurmountable challenges that we now know can be overcome.

This treatment is different than embryonic stem cells and comes from the donated, healthy umbilical cords of mothers. This treatment has been clinically shown to drastically improve debilitating symptoms in Autistic children, as well as reduce overall inflammation associated with our sweet nugget's other health issues (neutropenia, eosinophil esophagitis, and other seemingly undiagnosable gut inflammation issues). Unfortunately, this treatment is not covered by insurance, is not available in the US due to requiring millions/billions of dollars to pass FDA trials, and the cost is profoundly expensive for average income families (which we are). There is nothing we would not do to help give our son the life he deserves with more comfort and less challenges than he faces today. Any donation is absolutely appreciated to help get us closer to our goal to get him this life changing treatment. We understand that this is financially a difficult time for most due to the current world and US economy issues, inflation, etc. If you cannot donate, please simply help spread the word.

For reference, the cost of the treatment for sixty (60) million cells given over four (4) days is $16,875. This also covers our hotel stay. The cost for round-trip flights for the three (3) of us is roughly $3,000 as the medical facility is located in Panama City, Panama. The facility is called the Stem Cell Institute, and they are the world leaders in allogeneic mesenchymal stem cells. These are considered the "golden standard" for stem cells and treat a variety of conditions. They were originally designed to treat autoimmune diseases/disorders but have been found to have miraculous results with a plethora of other issues to include Autism. Their website can be found here: Stem Cell Institute . Should we meet our goal or get close enough to cover the remainder of the cost, we plan to document and share the results with the community. If anyone has further questions, we would be happy to answer them. Thank you, a thousand times, for reading this far!