Haytham

I was, just as most moms when they discover they are expecting a child, so excited. Thrilled to welcome a new little person into our family and into this world. I am happy to be Haytham’s mom and I do it all with love. If you met us on the street, you might think that Haytham is a typical toddler. But appearances don’t always tell the story of what’s going on inside. We have endured a long, hard road and still have a long way to go. Having other children to compare Haytham’s progress to, it was not long after he was born, that I started noticing differences. Somethings were just not happening in the same timeframe as my previous children. I realize all children are different and develop at their own unique pace, but deep down, I knew early on, that Haytham was not typical.

Haytham was falling further behind in many ways. He had low muscle tone and he couldn't sit on his own. He could not chew so I had to blend all his food into purees. He started weekly therapy visits including physical therapy and speech, as Haytham was still not talking. Haytham has been diagnosed with Autism Spectrum Disorder and has ADHD and behavioral issues. Haytham has what doctors call “developmental delays”. This is a very general term for basically not being able to do a lot of things that he should be doing. This is a lifetime, life-altering condition. In fact, there are so many things he may never do. But even through all of these obstacles, Haytham is a strong. I knew this from the time he was hospitalized in intensive care at 8 months due to a respiratory virus and was placed in an induced coma. Just prior to that, he had stomach surgery because his intestines were twisted. Although his recovery was long and painful, Haytham pulled through. He still has severe constipation and, in the coming years, would face more surgery. Doctors had no answers and I began to get comfortable with the unknown. I am happy to say that his intestines surgery and placing for Gtube was successful!

 

Luckily, I found doctors that we were willing to do more testing. We did genetic testing, Whole Exome Sequencing, that revealed, that beneath his contagious smiles and laughter, is a rare genetic disorder that affects Haytham’s brain function,

GRIN2B. We received this diagnosis when Haytham was just two years old and, since then, our world has been anything but normal. Meanwhile, Haytham has suffered many seizures and has endured many EEGs. He takes 3 seizures medications a day (7 total for other issues such as reflux and sleep) and we have yet to get his seizures under control. They have actually continued to get worse and the doctors aren't sure if we will ever gain control. He continues to have sleep issues that, I believe, are caused by his abnormal brain activity and we have had to increase his melatonin. But Haytham has now achieved many things that doctors did not initially believe he could accomplish such as sitting independently, pulling to stand, holding onto a table and walking around it, and can now say about a dozen words. Haytham is starting to use sign language, but still has many feeding issues. He is proving them wrong and as a parent, I still teach the doctors and nurses about Haytham’s GRIN disorder and all the symptoms and complications that come with it.

I have always known that Haytham is a warrior and he is here for a reason. He has taught me so much about life and about myself as a person. My love for him fuels my fight for him. His perseverance is inspiring and gives me the strength I need to continue fighting for him. I will never give up on him. Parents like myself, doctors, scientists, and researchers are now working together to find a cure for our loved ones. Haytham’s GRIN Disorder is very rare, and I don't know what the future holds for Haytham, but we will do everything in our power to help him develop to his fullest potential. It is my deepest hope that we can connect with and inspire other families with children with GRIN disorders. Please follow our Facebook page “Haythams GRIN2B Journey” if you are interested in staying connected to our story and Haytham’s progress from Belgium.