Logan was born in 2003 as the second child in his South Florida family.  He started rolling over quicker than expected.  However, his developmental progress slowed to the point where he was staring at lights, when he was not scream crying. I started to notice at 6 months old that something was not right.  Logan didn’t sit up completely on his own until 2 years old.  He is able to walk in a gait trainer for short distances and learned how to do that around 3-4 years old.  He was miserable for much of his younger years despite my effort to get him relief through many doctor visits.  I believe that GI discomfort was a huge part in his misery although neurological issues no doubt played a part in it as well.  Medicines never have completely made him comfortable, but they have helped.  He is now more comfortable in the last 2 years than he ever was before.  I give many thanks to Boston Children’s for helping find a regimen that is finally working for him.  

The rollercoaster of hope and reality went on for years.  Normal development and special needs development are both gifts, although the former was much harder to accept.  The why, and how haunted me for so long.  At some point in the journey, I realized that I was wasting these precious early years being sad and trying to fix Logan, instead of enjoying my precious baby and the gifts that he had to give. No one ever really understands the deep love, the deep pain, and the deep joy of raising a special needs child unless they have lived that life. 

What Logan did give us was far more than I ever could have asked.  He gave the ability to have patience, unconditional love, and compassion.  He showed me how to be grateful for the small things in life.  How to have faith, and what pure joy and innocence looks like.  He is the most amazing human I have ever met.  He accepts life day by day and doesn’t cry for things he does not have.  He is grateful and has so much love that many people may never truly see.  He reaches to you so subtly.  He is a soul that gives and craves love and affection.  And oh is this child loved, and always will be.  I cannot imagine life without Logan.

Logan went to many doctors as a child, as I attempted to discover why he was not meeting developmental milestones, and why he was constantly miserable. I took him to see a genetic Dr., and he told me that I could expect that Logan would need special education.  I was devastated.  Driving back from the University of Miami to his daycare in Sunrise, FL was the longest saddest drive I have ever had, I never felt so alone in my life.   He was only a year old.  I remember getting to my office at work, closing my door and just breaking down crying like I have never cried in my life. My husband was in denial that anything was wrong with Logan, and I had gone to the Dr. by myself.  The journey of finding the medical help for Logan was always a very lonely journey.   Eventually be both came to realize that Logan would always need care.  We accepted that, loved and did the best that we could.

We moved to the Boston area when Logan was 14.  I was excited because I knew Boston had some of the best children’s hospitals in the nation.   I took Logan to the neurologist at Tufts University who referred us to the genetic Dr. at Tufts.  She ordered a new autism panel for Logan.  through the years, doctors had ran so many genetic tests on Logan that I really did not expect them to find anything.  I was hopefully but did not expect.  That panel was the test that showed us that he had a GRIN1 syndrome.  At age 14 we finally had a diagnosis.  It was such a relief to finally have an answer.  So happy, yet so sad.  It was real, and there was no cure. Thrilled that it was not degenerative, but sad that hope of a miracle cure that had faded over the years was at that point completely gone.  I know now though that there is hope, hopefully for Logan’s generation, but if not his then the next generation.  We always said there was no other child like Logan. Little did we realize just how rare his condition was.   We began memantine and unfortunately Logan began to have Tonic seizures for the first time ever. He had Myoclonic seizures as a toddler and small child but had outgrew them.  Luckily after an overnight visit to Tufts and stopping memantine, he has been seizure free for 3 years. Logan has a gain of function variant.

Logan has always had such a sweet disposition.  I used to wish that if Logan could have anything in life it would be to be happy and to not be in pain, that wish has come true for the most part.  Yes he still has uncomfortable GI spells, but they are much much less and he is much happier and aware of his surroundings.  He knows so much more than he gets credit for.  He watches me the whole time I make his food.  If I ask him a question at times he laughs appropriately.  Clues that he really does understand more than he can tell us.  He knows what goes on, he sees what goes on, and most importantly he feels what goes on. Logan is happy in sunny Phoenix now living with his Mother, older Brother and awesome and energetic dog Wyatt.