Chavez Family Fundraiser
Donation protected
On 7-11-15 our family became complete when we welcomed our second child, our sweet son, Jace Joseph Chavez. We left the hospital with a perfect 6lb 1oz little peanut....we knew that our life was going to be different as we adjusted to having two little ones under the age of two. But, we had no idea how different our life was truly about to become.
Shortly after we brought Jace home he started making a squeaking noise and struggled to breathe while he ate. This difficulty caused him to fall off the growth charts and he was considered failure to thrive. He then was evaluated by many specialists and had multiple tests. He was diagnosed with Laryangomalacia (a floppy Larynx) and Acid reflux. The Dr. Said he would out grow it, gave us some anti acid medication and sent us on our way. As the months went on Jace was not meeting his age appropriate milestones and was still not growing as expected, his breathing became more labored and everyone become more worried. On Jan 27th, 2016 we met with a team of 7 specialists at Denver's Childrens Hospital who evaluated Jace and urgently ordered surgery on his esophagus and multiple scopes, proves, biopsies, etc.... for the next day, in hopes of finding answers for our little guy. It was discovered that he had multiple airway defects, a floppy Trachea, floppy Lungs, aspiration pneumonia and a narrowed airway. All of which can be life threatening if he catches a common cold or respiratory infection. This team of Doctors were also very concerned about Jace's development delays, so they ordered a Neurology and Genetics consult for the day after that. From there our lives were rocked and turned upside down. A brain MRI showed that our sweet little boy has Agenisis of the Corpus Callosum, he is missing a large part of his brain. ACC is a rare birth defect (congenital disorder) in which there is a complete absence of white matter connecting the two hemispheres of the brain. This puts him at risk for seizures, physical, social and emotional developmental delay.
Two weeks later we received his genetic results. As if we could handle anymore, it was again bad news. Jace has an extremely rare genetic syndrome. A Chromosome 21q deletion. There are only 45 documented cases. This explains the abnormal brain development, poor muscle tone, delayed physical and mental development. However, it also puts him at high risk and predisposes him to Lukiemia, rare blood disorders, immune diseases, sudden death, heart defects, vision problems, hearing loss, speech delay and moderate to severer intellectual disabilities. We were told that our son may never walk or talk.
We have since found out that Jace in fact has, poor vision, a mild hearing loss, a small hole in his heart, low platelets and he is currently supplementally fed with a feeding tube. With more tests and appointments in the near future.
Our lives now consist of heart ache, worry, fear, doctors appointments, therapies, medications and hospital stays.
A diagnosis defines a lot of things but LOVE is NOT one of them and in our eyes he is absolutely perfect. As we begin to process these diagnosis' and let them settle into our hearts....We have to tell ourselves that God does have a plan for us. This child is greater than ourselves and he was given to us for a reason. Maybe he was sent here as our teacher...to teach us faith, unconditional love, strength, patience, perseverance, selflessness and compassion. I don't know yet.... But, I can tell you one thing he has already taught us is...that life is not perfect but it is precious, to enjoy every moment and to LOVE like crazy. I hope in time we are able to find peace and to accept happiness into our life again because right now our days are dark.
For now....We will try to muster up every ounce of strength we have and teach our kids how to fight and never give up!
We know that with faith, hope, love and support from our family, friends, co-workers and community we will make it through this and provide the best life we possibly can for our little warrior. We have faith and hope that he will beat the odds.
We are the very PROUD parents of a very special little boy who is the epitome of a true fighter and everyday that he is able to smile so will we.
We would appreciate it if you would keep Jace and our family in your thoughts and prayers.
And if you are able to help ease some of the financial burden that our situation is causing us, we would be forever appreciative and grateful. Your love and support means everything to us.
Thank you for hearing our story.
With Love,
The Chavez Family
Nick, Megan, Nylah and Jace
Shortly after we brought Jace home he started making a squeaking noise and struggled to breathe while he ate. This difficulty caused him to fall off the growth charts and he was considered failure to thrive. He then was evaluated by many specialists and had multiple tests. He was diagnosed with Laryangomalacia (a floppy Larynx) and Acid reflux. The Dr. Said he would out grow it, gave us some anti acid medication and sent us on our way. As the months went on Jace was not meeting his age appropriate milestones and was still not growing as expected, his breathing became more labored and everyone become more worried. On Jan 27th, 2016 we met with a team of 7 specialists at Denver's Childrens Hospital who evaluated Jace and urgently ordered surgery on his esophagus and multiple scopes, proves, biopsies, etc.... for the next day, in hopes of finding answers for our little guy. It was discovered that he had multiple airway defects, a floppy Trachea, floppy Lungs, aspiration pneumonia and a narrowed airway. All of which can be life threatening if he catches a common cold or respiratory infection. This team of Doctors were also very concerned about Jace's development delays, so they ordered a Neurology and Genetics consult for the day after that. From there our lives were rocked and turned upside down. A brain MRI showed that our sweet little boy has Agenisis of the Corpus Callosum, he is missing a large part of his brain. ACC is a rare birth defect (congenital disorder) in which there is a complete absence of white matter connecting the two hemispheres of the brain. This puts him at risk for seizures, physical, social and emotional developmental delay.
Two weeks later we received his genetic results. As if we could handle anymore, it was again bad news. Jace has an extremely rare genetic syndrome. A Chromosome 21q deletion. There are only 45 documented cases. This explains the abnormal brain development, poor muscle tone, delayed physical and mental development. However, it also puts him at high risk and predisposes him to Lukiemia, rare blood disorders, immune diseases, sudden death, heart defects, vision problems, hearing loss, speech delay and moderate to severer intellectual disabilities. We were told that our son may never walk or talk.
We have since found out that Jace in fact has, poor vision, a mild hearing loss, a small hole in his heart, low platelets and he is currently supplementally fed with a feeding tube. With more tests and appointments in the near future.
Our lives now consist of heart ache, worry, fear, doctors appointments, therapies, medications and hospital stays.
A diagnosis defines a lot of things but LOVE is NOT one of them and in our eyes he is absolutely perfect. As we begin to process these diagnosis' and let them settle into our hearts....We have to tell ourselves that God does have a plan for us. This child is greater than ourselves and he was given to us for a reason. Maybe he was sent here as our teacher...to teach us faith, unconditional love, strength, patience, perseverance, selflessness and compassion. I don't know yet.... But, I can tell you one thing he has already taught us is...that life is not perfect but it is precious, to enjoy every moment and to LOVE like crazy. I hope in time we are able to find peace and to accept happiness into our life again because right now our days are dark.
For now....We will try to muster up every ounce of strength we have and teach our kids how to fight and never give up!
We know that with faith, hope, love and support from our family, friends, co-workers and community we will make it through this and provide the best life we possibly can for our little warrior. We have faith and hope that he will beat the odds.
We are the very PROUD parents of a very special little boy who is the epitome of a true fighter and everyday that he is able to smile so will we.
We would appreciate it if you would keep Jace and our family in your thoughts and prayers.
And if you are able to help ease some of the financial burden that our situation is causing us, we would be forever appreciative and grateful. Your love and support means everything to us.
Thank you for hearing our story.
With Love,
The Chavez Family
Nick, Megan, Nylah and Jace
Organizer
Megan Chavez
Organizer
Arvada, CO