Jonathan's Challenge
Donation protected
My Name is Susan Flury Riviere and this is my Godson Jonathan Robert Daly. Born on September 28th, 2015.
JONATHAN ROBERT DALY
Born: September 28th, 2015
We often tend to feel sorry for ourselves when life’s challenges become overwhelming and in some cases rightfully so. However, more often than not, once we’re able to take a step back, and truly put things in perspective a lot of these obstacles don’t necessarily seem all that bad. One such example of a truly inconceivable hardship is the story of a newborn baby whose recent birth was both a miracle and a reminder of how precious our lives truly are. On September 28th, 2015, I was blessed with a beautiful nephew and Godchild, when by the grace of God my own sister brought him into this world. As Jennifer and her husband Kevin can attest (their new baby boy being their 2nd son) there is no greater joy than the gift of children. Yet for as precious and special Jonathan Robert Daly is, unfortunately he was born with a rare and potentially terminal disorder that only 8-10% of babies survive in infancy.
Jonathan is afflicted with a rare condition called Acampomelic Campomelic Dysplasia. This severe affliction affects the development of the skeleton, reproductive system and various other body parts. As it currently stands, newborn Jonathan suffers from an unstable vertebra in his neck that forces him to wear a neck brace until a time when his skeletal growth reaches full maturity. Jonathan also has a cleft pallet that makes it impossible to swallow food. His nourishment comes from a feeding tube that was inserted into his stomach. Additionally, Jonathan was born with a club foot that requires a cast to keep his bones intact. Despite all these terrible challenges, he faces the prospect of many more surgeries and hurdles to bear. The love and hope of our family has never wavered throughout his struggles. My sister and brother in law, with the support of family and friends, are doing all they are capable of doing to assist in his survival. Since being transported to Lutheran General Hospital shortly after his birth his parents have hardly left his side. His courage and determination are an inspiration to all that have met him and we pray that someday soon he may finally leave the confines of the hospital
and go home with his mother and father.
As I am sure you understand the insurmountable medical costs that will undoubtedly continue with future procedures and care have taken their toll on his parents both emotionally and financially. Our faith and support has been unrelenting but the mounting health care bills have become more than Jonathan’s parents can afford. We all consider this lovely infant a miracle and we hope that during the season of miracles you can find it in your heart to assist us in our mission to save his life. We realize that his fate is in the hands of many expert medical professionals, and ultimately in the will of God, but we hope to give him a fighting chance. Therefore, as no donation or support is too small, we hope
that you will join us in prayer and any assistance you are capable of giving.
Thank you.
JONATHAN ROBERT DALY
Born: September 28th, 2015
We often tend to feel sorry for ourselves when life’s challenges become overwhelming and in some cases rightfully so. However, more often than not, once we’re able to take a step back, and truly put things in perspective a lot of these obstacles don’t necessarily seem all that bad. One such example of a truly inconceivable hardship is the story of a newborn baby whose recent birth was both a miracle and a reminder of how precious our lives truly are. On September 28th, 2015, I was blessed with a beautiful nephew and Godchild, when by the grace of God my own sister brought him into this world. As Jennifer and her husband Kevin can attest (their new baby boy being their 2nd son) there is no greater joy than the gift of children. Yet for as precious and special Jonathan Robert Daly is, unfortunately he was born with a rare and potentially terminal disorder that only 8-10% of babies survive in infancy.
Jonathan is afflicted with a rare condition called Acampomelic Campomelic Dysplasia. This severe affliction affects the development of the skeleton, reproductive system and various other body parts. As it currently stands, newborn Jonathan suffers from an unstable vertebra in his neck that forces him to wear a neck brace until a time when his skeletal growth reaches full maturity. Jonathan also has a cleft pallet that makes it impossible to swallow food. His nourishment comes from a feeding tube that was inserted into his stomach. Additionally, Jonathan was born with a club foot that requires a cast to keep his bones intact. Despite all these terrible challenges, he faces the prospect of many more surgeries and hurdles to bear. The love and hope of our family has never wavered throughout his struggles. My sister and brother in law, with the support of family and friends, are doing all they are capable of doing to assist in his survival. Since being transported to Lutheran General Hospital shortly after his birth his parents have hardly left his side. His courage and determination are an inspiration to all that have met him and we pray that someday soon he may finally leave the confines of the hospital
and go home with his mother and father.
As I am sure you understand the insurmountable medical costs that will undoubtedly continue with future procedures and care have taken their toll on his parents both emotionally and financially. Our faith and support has been unrelenting but the mounting health care bills have become more than Jonathan’s parents can afford. We all consider this lovely infant a miracle and we hope that during the season of miracles you can find it in your heart to assist us in our mission to save his life. We realize that his fate is in the hands of many expert medical professionals, and ultimately in the will of God, but we hope to give him a fighting chance. Therefore, as no donation or support is too small, we hope
that you will join us in prayer and any assistance you are capable of giving.
Thank you.
Organizer and beneficiary
Susan Riviere
Organizer
Cape Coral, FL
Jennifer Daly
Beneficiary