The Chasen Tailz tournament is on Sept 5th -7th. This is a great event for a great cause!! Please click on link below, and register your team. https://www.chasentailz.com/
“We made a promise to our son prior to his death that we would help children like him and that is how Chasentailz came to be.
On October 1 2012 our dream finally came true, Chase Edward Warren was born. Our perfect healthy son or so we thought. We look back on the day we announced Chase’s birth and we were specific to note he was healthy after years of trying to conceive and miscarriages. Jay such a proud father and I completely in love, there is no other stronger love then the love of a child.
The next day during a routine hearing exam, Chase did not pass; we disregarded this to fluid in his ears. Two weeks after discharge we went back for a hearing exam and 2 more times Chase failed. We thought could it be possible our son is deaf? As you can imagine this was devastating and our hearts broke learning all the things our perfect son would miss out on. We immersed ourselves in the deaf community and started preparing for life with a deaf child.
At 3months old we began to notice that Chase was not growing or meeting milestones. We were referred to every specialists you can think of totaling 13 and physical, occupation and speech therapy. We also had a teacher for the deaf come once a week. No one could tell us what was happening to our son.
At 8 months old and several PICU stays and every test you can imagine, Genetics became involved. Chase was 13lbs, could not roll over, his eyes were crossed, he was losing his ability to move, his spine was curved 30%, severe reflux , enlarged organs, bone abnormality, severe neurological impairment, global developmental delay, severe breathing difficulty, barely able to swallow. We now fed him mostly by syringe to make it easier for him to not have to swallow. We begged the doctors for answers and longed for days when we thought hearing loss was Chase’s biggest challenge.
He was progressively getting worse but Chase knew life no other way and fought through the choking with a big smile. He loved singing and to read books. He loved his dog and family.
The next day during a routine hearing exam, Chase did not pass; we disregarded this to fluid in his ears. Two weeks after discharge we went back for a hearing exam and 2 more times Chase failed. We thought could it be possible our son is deaf? As you can imagine this was devastating and our hearts broke learning all the things our perfect son would miss out on. We immersed ourselves in the deaf community and started preparing for life with a deaf child.
At 3months old we began to notice that Chase was not growing or meeting milestones. We were referred to every specialists you can think of totaling 13 and physical, occupation and speech therapy. We also had a teacher for the deaf come once a week. No one could tell us what was happening to our son.
At 8 months old and several PICU stays and every test you can imagine, Genetics became involved. Chase was 13lbs, could not roll over, his eyes were crossed, he was losing his ability to move, his spine was curved 30%, severe reflux , enlarged organs, bone abnormality, severe neurological impairment, global developmental delay, severe breathing difficulty, barely able to swallow. We now fed him mostly by syringe to make it easier for him to not have to swallow. We begged the doctors for answers and longed for days when we thought hearing loss was Chase’s biggest challenge.
He was progressively getting worse but Chase knew life no other way and fought through the choking with a big smile. He loved singing and to read books. He loved his dog and family.
On July 31, 2013 Chase had a spasm in his larynx that caused him to stop breathing and coded on us. As the paramedics worked on our son in our front yard surrounded by our neighbors, I begged God to take me instead. It was then that as a mother I knew Chase was tired and had fought hard. Chase was placed on life support with a feeding tube in a medically induced coma, arms tied down. He fought to come back to us, we removed him from the ventilator but his little body had endured so much the last 10 months. We made a decision no parent should have to make, to take Chase home with Hospice. Once home, he rolled over to his left side just as he always did. After a day of singing and cuddles he passed away surrounded by love and family on August 7, 2013.
A piece of our hearts died with Chase that day and we vowed to help others. Two days after Chase passed we received the fatal diagnosis of Gaucher Type 2; there is no treatment or cure. These children and parents have no options as with most neurological childhood disease. This is why we are proud to have started ChaseN’Tailz in Memory of our beautiful son. We hope to spread awareness about rare diseases and raise funds for needy families with very sick children.”
A piece of our hearts died with Chase that day and we vowed to help others. Two days after Chase passed we received the fatal diagnosis of Gaucher Type 2; there is no treatment or cure. These children and parents have no options as with most neurological childhood disease. This is why we are proud to have started ChaseN’Tailz in Memory of our beautiful son. We hope to spread awareness about rare diseases and raise funds for needy families with very sick children.”