Our sweet boy was born June 14, 2020. Not known until three months later, he was born with an ultra-rare genetic disorder of the UGDH gene. To define ultra-rare, there were only 36 other known cases WORLDWIDE when Connor was diagnosed. This specific gene mutation is the cause of infantile spasms, epilepsy, hypotonia, respiratory distress, among more complications . UGDH is also responsible for developing epileptic encephalopathy which directly affects the brain, causing cognitive and developmental delays. This specific form of epilepsy is known to be drug-resistant, making it extremely difficult to treat. Each child affected by this devastating diagnosis, although very similar in many ways, are all at varying degrees of severity. Even with how advanced medicine is today, there is no defined treatment plan or cure for epilepsy caused by the UGDH gene mutation. As Connor did, each child is writing their own story and are guiding their parents in what they may need and when.

Devastatingly, for us, Connor was struggling, so we had to make the unimaginable decision to let him go. We chose peace. We chose to free him from his reality of suffering. There is no rule book, there is no guideline. This diagnosis is a journey to the unknown. These kids are unbelievably strong. Their families are relentless. I am partnering with two other sets of parents to create a UGDH non-profit. We are in the beginning stages but hoping to have our foundation created so soon! I have designed these shirts in honor of our boy and all profits will be used either for our start-up costs or will be transferred directly to the foundation where we will be recruiting doctors and researchers to help develop treatment plans for UGDH affected epilepsy and one day, a cure!

"Connor?s Corner" has become the name of Connor?s team and backbone, his family, friends and anyone who have prayed or supported him in any way. The wave has many meanings. Waves are constant movement of energy that can be calming, or enormous strength, therefore symbolizing power. The wave also represents ups and downs of life. A quote I heard went something like this, "We may not be able to stop the waves, but we can learn to surf." The wave represents Connor?s life, and also his super cute wave-like flip of blonde hair a top the bluest eyes and sweetest cheeks you ever did see. The sunrise to me, represents everlasting life and hope. Every day the sun rises again and I preach to myself, ?today is a good day for a good day?.

So, family and friends, please order a shirt or sweatshirt in honor of our sweet Connor. I know it won?t bring him back but knowing we may be able to help others suffering the same way, brings some comfort in our loss.

We thank you in advance for all of your love and support!

~ Alyssa, Matt, Parker & Baby Connor