Noley Bear
Donation protected
I met Nolan when he was about 6-8 months old and the first thing I noticed was that awesome smile and something intrigued me about the little guy. I learned about his unfortunate medical diagnosis and knew I had to become an advocate for him. After reading the below bio, I hope you will see why. I am trying to raise money for his surgery and support for his mother. I will also be representing him in a 5k and a half marathon next year. Any support or donation is greatly appreciated, thank you!!!
Nolan’s name is of Irish decent meaning Noble, and he is nothing short of that. He has such an amazing personality with a true love for music, sports and motorcycles…oh and of course Mickey Mouse. Give him a ball, a dirt bike, a guitar or drumsticks and he will play for hours. He loves to be outside and get dirty or be in water. He is rarely without a smile and loves being surrounded by laughter. He is nothing short of amazing and every day with him is an adventure in itself.
Nolan was born full term on July 6, 2015 to a hard-working single Mom (Meggan). He had a great delivery and everything seemed to be going great until his mom noticed some facial features, that to her were cute, but raised alarms to the medical staff. Shortly after, Nolan was in and out of tests all day, each one coming back normal and of no concern, until the last test of the day. He was given an echo of his heart, to check the overall function and that the development was were it needed to be. Shortly after his echo, a doctor came in to inform Nolan’s mom of the results that they had feared.
Nolan was born with a Congenital Heart Defect (CHD)known as Truncus Ateriosus. This occurs in 1 of every 100 children born and is the number one killer of infants due to heart defects. There is no cure and no explanation as to why this happens, but thankfully it was caught before he was sent home.
Within minutes after the news, Meggan was informed Nolan would require one of many open heart surgeries (OHS). He was taken from his mother’s arms and rushed to Los Angeles, to prepare for his surgery. Thankfully Nolan’s vitals were stable and he was able to breath on his own, learn to eat and receive care, until his surgery.
During those two weeks prior to his scheduled surgery date, many tests were performed. One being a genetic test to see if there was an underlying factor that caused his asymmetrical face and his heart defect. Shortly after, his mother received more devastating news. Nolan was not only born with a rare form of CHD, but an extremely rare genetic deletion known as DiGeorge Syndrome. This syndrome’s nickname is Catch 22 because you don’t know what you can get from it. The number of issues that could arise , are not able to be counted and are still unknown as to what can come of it.
The noble warrior that Nolan has become has been such a blessing to his family. He has shown strength and ability to adapt to whatever obstacles may come into his path. Nolan is now two and has multiple minor surgeries to push back his next of many open heart surgeries.
Unfortunately it is now time for his next major surgery. He will encounter his second open heart surgery in October of 2017. This is bittersweet situation for Nolan and his family but it is for a better quality of life and we know that Nolan will overcome this recovery, just as he did the first one. He will go back for his second OHS. We are unsure of how long or extensive his recover will be but know that he will be supported, loved and most of all under the protection of God. That is what brings us comfort for this little heart warrior.
Nolan’s name is of Irish decent meaning Noble, and he is nothing short of that. He has such an amazing personality with a true love for music, sports and motorcycles…oh and of course Mickey Mouse. Give him a ball, a dirt bike, a guitar or drumsticks and he will play for hours. He loves to be outside and get dirty or be in water. He is rarely without a smile and loves being surrounded by laughter. He is nothing short of amazing and every day with him is an adventure in itself.
Nolan was born full term on July 6, 2015 to a hard-working single Mom (Meggan). He had a great delivery and everything seemed to be going great until his mom noticed some facial features, that to her were cute, but raised alarms to the medical staff. Shortly after, Nolan was in and out of tests all day, each one coming back normal and of no concern, until the last test of the day. He was given an echo of his heart, to check the overall function and that the development was were it needed to be. Shortly after his echo, a doctor came in to inform Nolan’s mom of the results that they had feared.
Nolan was born with a Congenital Heart Defect (CHD)known as Truncus Ateriosus. This occurs in 1 of every 100 children born and is the number one killer of infants due to heart defects. There is no cure and no explanation as to why this happens, but thankfully it was caught before he was sent home.
Within minutes after the news, Meggan was informed Nolan would require one of many open heart surgeries (OHS). He was taken from his mother’s arms and rushed to Los Angeles, to prepare for his surgery. Thankfully Nolan’s vitals were stable and he was able to breath on his own, learn to eat and receive care, until his surgery.
During those two weeks prior to his scheduled surgery date, many tests were performed. One being a genetic test to see if there was an underlying factor that caused his asymmetrical face and his heart defect. Shortly after, his mother received more devastating news. Nolan was not only born with a rare form of CHD, but an extremely rare genetic deletion known as DiGeorge Syndrome. This syndrome’s nickname is Catch 22 because you don’t know what you can get from it. The number of issues that could arise , are not able to be counted and are still unknown as to what can come of it.
The noble warrior that Nolan has become has been such a blessing to his family. He has shown strength and ability to adapt to whatever obstacles may come into his path. Nolan is now two and has multiple minor surgeries to push back his next of many open heart surgeries.
Unfortunately it is now time for his next major surgery. He will encounter his second open heart surgery in October of 2017. This is bittersweet situation for Nolan and his family but it is for a better quality of life and we know that Nolan will overcome this recovery, just as he did the first one. He will go back for his second OHS. We are unsure of how long or extensive his recover will be but know that he will be supported, loved and most of all under the protection of God. That is what brings us comfort for this little heart warrior.
Organizer and beneficiary
Matt M
Organizer
Moreno Valley, CA
Meggan LaRiviere
Beneficiary
