Jacob's story

Jacob was born a healthy baby boy one day before his due date on Aug 28th.  Being first time parents, we were so excited for this little boy.  He was perfect to us!!  We moved when Jacob was 7 months old, from Arizona to Texas.  When we were there I started to see a little bit of odd things that Jacob did.  He never looked us in the eyes or never responded to his name.  We would call his name and he would ignore us.  We thought that maybe he had hearing problems.  But they ruled that out with some testing.  When we would go to playdates, Jacob would spend the whole time running around the house touching EVERYTHING!  He would never really play with the other kids.  I kept redirecting him to the other kids but he would go right back to circling the house or the room he was in.  He also never started talking with the other kids his age did.  I was fluent in sign language and so when he was about 9 months old I started teaching him signs.  When he didnt talk at 2, I thought it was my fault because he was using sign language instead of talking.  So I stopped using signs, but he still didnt talk.  We moved back to Arizona when Jacob was almost 3.  When we came back I was talking to my sister about Jacob not talking.  She told me that there was a preschool in the school district that I could send him to and they would work on his speech.  So 6 months later I got him enrolled in that.  As soon as he started the school he started to talk!  He finally said his first word when he was 3 1/2.  He went to 2 years of preschool and when it was time for him to go to Kindergarten his teacher took me aside and said that we needed to get him evaluated for ADHD because there is no way he would be able to function in Kindergarten if we did not do something about it.  So a few months later we had an appt with a developmental pediatric specialist and she evaluated him and said that he has Autism.  I was not prepared for that!  I went in thinking he had ADHD, not autism!  Then we went back a few months later and he got the official diagnosis of Autism, ADHD, hypotonia (low muscle tone) and developmental delays.  He then went to kindergarten for a few weeks and it was evident that it would not work for him.  So we enrolled him at a school for kids with autism and he did great!  When he was 8 we decided to take him out of school and homeschool him.  And we have been doing that ever since, and it has been wonderful for him.  When he was 9 we decided to take him to an allergist because he was complaining a lot of stomach aches.  He got allergy testing about a year before and it was shown that he was allergic to every single thing they tested him for.  So we thought we would get food allergy testing done because he was showing signs of a food allergy.  When we went to the allergist he told us that he thought we should see a GI doctor first.  So we went and he did an exam and told us that Jacob was very constipated.  When we did the at home clean out that night we went back the next day and the doctor did an xray on Jacob and it showed he was severely constipated.  So he admitted us for a clean out.  After that we had gone every 7 months or so until the last year...we have had to go every 2 months for that same clean out.  At one of the hospital visits they told us that they thought he needed to see a neurologist because he was having passing out spells and headaches.  When we went the doc told us that he thought Jacob had something called Mitochondrial disease... specifically Kearns Sayre Syndrome.  What is funny about that is, the morning before, Jacob was at the eye doctor because he just had surgery on his eye lids.  They were really droopy so the eye doctor went in and lifted them up.  This was his 2nd surgery for the same thing.  That eye doctor had also told me he suspected Kearns Sayre Syndrome.  It is a VERY rare syndrome and to have 2 doctors tell us back to back, it was amazing.  So we did lots of testing and a muscle biopsy and through all of that it was determined that Jacob was in fact diagnosed with Kearns Sayre Syndrome which is part of the mitochondrial diseases.  In the past 6 months, Jacob has gotten significantly worse.  HIs muscles are very weak and he has a hard time doing much of anything without being tired.  This dog would mean the world to him!  He would finally be able to get some life back.  It also gives him a friend...something he has never had before.