The Beginning Journey

 The Readers's Digest Condensed Version

For 10 years I have researched and done everything I can to bring a better quality of life to my grandsons who are Autistic.  I also want a calmer, less chaotic, and better quality of home life for my daughter and her husband, devoted parents.  

In studying "Stem Cell Treatment" I found hope for this family.  But how to make it happen and where to make it happen were my questions.  I finally found "Trinity Stem Cell Institute" in Laredo, Mexico. 

The "War and Peace" Version

Why is it so much easier to give than to receive?  At least that is the way it is for me as I am sure it is for a lot of you.

This is the story that leads to this fundraiser.  I am telling it with all the good and bad and raw honesty of my heart.  

Our youngest daughter, Kami, married her husband one week after graduating from FIDM design school in Los Angeles.  Ben had previously been in the military for several years and they made the decision to go back to the military so he could earn his degree during this time, and he did.  Knowing the chances were highly likely he would be deployed they decided to start their family and not wait.  Kai, their oldest was born July 1, 2008.  He was 6 months old when Ben left for Iraq.  By the time Ben came home, of course Kai didn’t know who he was.

But something else had happened during that deployment.  An incoming ICD from the enemy came into the barracks and killed two young soldiers just eight doors down from Ben.  They had only been in the country for a week, and both were still teenagers.  It had a profound effect on Ben and others.  Between that and other situations, Ben came home a different person.  He suffered greatly from PTSD and to this day he still suffers.  Despite lots of therapy and counseling, it stays with him.

In September of 2010 Kami and Ben had their second son, Koa.  By this time Kai was over two and I could see there was just something different about him.  He was an absolute angel baby up until about this time.  Suddenly he was a quite different little boy.  He was so active and always running away.  I also noticed he did not start speaking like his cousin, Cash, did.  They were just a few months apart.  They were living at Schofield Barracks on Oahu, Hawaii at that time.  It was over the top difficult to get a diagnosis of Autism when they were in Hawaii.  Kami worked and worked at it.  I believe Kai was about 5 or 6 when he was diagnosed.  By this time Kami was pregnant with their third son.  Now we knew that the first son, Kai, was Autistic.  He was and is extremely intelligent, but I noticed from a very early age he didn’t know how to interact appropriately with children his age.  I was determined to do absolutely everything I could do to help this child, including being his soft place to fall.

I remember like it was yesterday the day Kami’s good friend came over.  We were talking about Kai’s diagnosis and this friend said she was just as worried about Koa.  She said, “If you notice he doesn’t look you in the eyes.”  Sure enough, both Kai and Koa were Autistic.  As I previously mentioned Kami was pregnant with her third, Makana, by then.  I thought to myself that at least she would have one normal child and what a blessing he would be to her.  Don’t get me wrong.  I loved Kai and Koa with unconditional love.

When Mak was a few months old I was talking to Kami on the phone.  I told her I just knew Mak would be normal and healthy.  Her reply to me was, “No Mom.  Mak acts just like Kai did when he was a baby.  I am sure he is Autistic!”  I just could not believe it and for a while I would not.  I did not believe God would allow that to happen to this daughter who had always been the sweetest and most caring.  Sure enough, the diagnosis came in and Mak was Autistic.  I was just plain mad at God.  For a while it was even hard for me to pray.  If there was a loving God, how could he allow this to happen to my lovely daughter, the one who had taken care of me through all my illnesses and surgeries.  So now she had three Autistic sons and a husband struggling with PTDS.  This just was not fair!  But life is not always fair is it.  I realized I could be as mad as I wanted to be at God, but it would not get us anywhere.  My job as their Grandma was to give as much help as I could possibly give to these boys.  And I determined to give my last breath, if that is what was required, to help them all I could.

I loved them, I tended them, I helped keep the house going so Kami could devote more time to them and their treatments.  Luckily, I had retired early so I had the time to do this.

Only a couple of months before Mak was born they were transferred to Virginia.  After the third diagnosis, when Mak was about two, Kami and Ben made the decision to get all the help and therapy they could while Ben was still in the service.  His PTSD made it impossible for him to stay in the Army.  I was sad about that because by this time he had served 13 years.  If he could make it another 7 years, he would get full retirement.  But that was not possible.

Now the never-ending appointments and therapy started for all three of them.  I moved from Utah to Virginia for a period of about five months and lived with them as intensive efforts to treat them began.  Kami and Ben and I all had our turns at driving boys to appointments and picking them up.  I vividly remember white knuckling it to Virginia Beach and back many times.  Driving in the east was not like driving in Utah or even Seattle.  I just hoped we would all get home in one piece.

At the end of this five months Kami and Ben moved their family to Utah where Ben began work at Hill Airforce Base.

Kai was eight at the time his family moved to Utah. Kami had signed him up for a special bike riding class for Autistic children.  It started before Kami and Ben would be in Utah, so I brought Kai and Mak on the plane with me and took Kai to his classes each day for a week.  I absolutely could not believe by the end of that week he was actually riding a bike with no help.  It is hard to know the joy of something like that unless you lived the experience.  I remember thinking now Kai could be like the other boys his age and actually ride bikes like they did.  Kami and Ben arrived the last day of class.  It was such a joy to see the happiness on their faces.  Little 5-year-old Koa kept pounding his fist into his hand and saying over and over, “Kai I am so proud of you!  I am just so proud of you!”  This was one of many special moments with these boys.

The next few years saw one challenge after another. Sometimes there were multiple challenges going at the same time.  Little Mak had something many Autistic children have.  He had a Defiance Disorder.  It made it almost impossible to discipline him because he just did not care what the discipline was, he was going to outlast you and win and often he did because we were so tired.  Koa had his own challenges.  This is the kid who taught himself to read before he was four years old.  But about the time he was seven he just decided it was okay if he pee’d in the closet, over and over again.  Nothing we did seemed to help.  They ended up tearing the flooring out of the closet and putting in new flooring.  Some time later I discovered he had done the same thing in a downstairs play area under the stairs in my house.  Kai had intense anger issues.  In school he would push desks over and destroy things.  Once again, the therapy was intense.  Sometimes we saw some improvement and other times we did not.

  I don’t think any Mother can feel the discouragement Kami felt without living it. Even though all three boys were in a charter school for Autistic children her youngest, who was at this time in the first grade, was suspended from school because he refused to do the work he was given, even though he was over the top intelligent.  That happened more than once.  Several times in fact.  Kai also was suspended several times for anger issues or refusing to do work.  Thankfully, Koa was doing better and was a good student.

Many times Kami called me in tears or absolutely exhausted.  “What should I do Mom?”  I really had no good answers for her, only encouragement.  Many times I was on my knees late into the night seeking guidance.  I was afraid Kami would collapse under the stress and then what would we do. I knew I didn’t have the strength to raise these three boys as much as I loved them.

About this time our oldest son, Jason, had a major heart attack.  He was only 47.  Two years later he had another heart attack, even worse.  He had open heart surgery but just did not improve as much as he needed to.  His employer talked to him about Stem Cell Treatment.  He talked Jason into receiving this treatment.  None of us would have believed it if we had not seen it.  His numbers came back up almost to where the numbers are for a normal person without heart issues.  He has done it twice now and will probably go back one more time.  I think he would not be alive today without Stem Cell Treatment. He encouraged me to investigate Stem Cell Therapy for Kami’s boys.

Before I go further let me explain the Stem Cells they use come from umbilical cord blood.  There are no fetus cells involved.

Over the last year I have done research after research after research.  I bought books on the topic and read those. I read stories online about this treatment.  It has been used for many health challenges such as Autism, Parkinson Disease, Sugar Diabetes, Spinal Cord injury, Cerebral Palsy and so much more.  There are no guarantees, but clinics outside have reported anywhere from 80 to 95% of their treatments have resulted in improvement of some kind in their patients.  In the United States there is limited Stem Cell Therapy.  The FDA considers it experimental.  They are always on the slow side to approve anything.  Duke University has done and continues to do studies using placebos and stem cells and the numbers are impressive.

The so-called premier clinic is in Panama.  It is known as “THE Clinic.”  However, it costs up to $20,000 a treatment.  For three boys that is $60,00 for one treatment and $180,000 for three treatments.  Travel expenses are outside of that.  There was just no way we could afford that.  So, I kept searching.

A couple of months ago I came across the Trinity Stem Cell Institute in Laredo, Mexico.  It is right across the border from Laredo, Texas.  I read an article about a woman who had an Autistic son that had been treated with stem cells with great results.  She had taken him to Panama for treatment but after much research had found Trinity.  The procedures they did were as good as Panama, but the cost was 50% less.  Her family has used this treatment center and were so impressed they decided to throw their support behind it.  Her family controlled a trust fund and every year committed this money to a worthy cause.  This year, 2021, their philanthropic efforts would go to Trinity Stem Cell Institute.  For each person that is treated for Autism at this clinic in 2021 they will pay half of the cost.  That means this year it would cost $4900 per boy for treatment.  If each of Ben and Kami’s sons have three treatments (it usually takes at least three and maybe four treatments,) the total cost for treatment would be around $45,000 plus travel expenses.  I had several friends that encouraged me to do a “Go Fund Me.”  Even if we raised enough for the first treatment it would be a start.

I have communicated with this clinic, including the doctor that would do the procedure.  They have been so kind and helpful.  I have written to other clinics, including Panama, and did not get so much as a response of any kind.

If you feel you could contribute to my grandsons’ treatments, I would be so grateful.  I absolutely do not want to pressure anybody so if you feel you cannot contribute, I understand.

Thanks to each and every one who has stood by Kami and Ben and their family and helped them and me through some very difficult years.  I am convinced there are still many, many good people in this world!

Sincerely,

Sharon Oram