May 2018 Family Spotlight: There is Hope!

May 25, 2018 By Sharon Taylor-Collum

I felt there was something different about my daughter Hope even as far back as when I was pregnant with her.  I kept having these recurring dreams that she was disabled.  I was so adamant that something was wrong her doctor even ordered extra tests but everything came back normal.  After giving birth my suspicions were confirmed despite the doctors saying my child was completely normal.  From the moment I first started trying to breastfeed my daughter, she had issues staying awake.  She would only stay latched on for a minute or two before falling asleep.  I didn’t find out until years later that this was due to her low muscle tone.

At every checkup I brought up the fact that she wasn’t hitting any of her developmental milestones, but the doctors kept reassuring me by saying that some children are slower to develop than others.  Finally at her nine-month checkup the doctor confirmed that something was wrong.  This was the start of a very long journey for us.  By three years old we received the devastating news that she was going to be disabled for the rest of her life.  The doctors weren’t completely sure what was going on, but they diagnosed her condition as Cerebral Palsy.  My world at that point came crashing down around me.  I cried a lot.  I got desperate…angry…jealous.  I had a hard time seeing other children hit their developmental milestones while my daughter struggled to meet the easiest targets.

It was at this point I started in with the “what ifs”; the constant Googling of what it could possibly be that was causing her to have so many problems.  It never ended.  It was overwhelming.  At age five Hope was diagnosed with autism, but it wasn’t until a year later that we finally learned that she suffered from Syngap1.  At first it was somewhat of a relief to finally get a diagnosis that explained her laundry list of issues.  But, at the same time, there was a new uncertainty as Snygap1 is a fairly new diagnosis and there is not a lot of confirmed medical knowledge regarding this condition.  Hope is the first child in the state of Oregon to be diagnosed with Syngap1.  I had to push and fight for what answers could be found.  We have seen more doctors, visited more therapists and had more tests done than I can even count.  It was a very hard, emotional and lonely road, but also very rewarding.  Hope has taught me that I am stronger than I ever thought possible and shown me a type of love I didn’t know even existed.  She is the sweetest and most loving child one could ever meet.  I am sharing my story so that others know never to give up fighting for your kids.  Go with your gut and don’t be afraid to push for answers.  You know your child better than anyone else.