Hope for Nathan
Donation protected
On April 3, 2015 Good Friday Jonathan “Nathan” Daniel Kelley was born in USA women and Children’s hospital in Mobile Alabama. It was the happiest moment of our life when my wife Dawn and I heard him cry for the first time. We had been at a specialist just 3 weeks before for concerns about the growth development of our first child together. We had been trying to have a child together for over 7 years. My wife and I had many heartbreaks and miscarriages along the way. We where into the third trimester of our pregnancy when our doctor told us that our son was not growing properly. When we went to see the specialist we had no idea what was going on and all we were told was that his chest had not grown properly and that there was a very strong chance that he would not survive birth. The doctor told us on the next visit that if we believed in God we needed to pray for lung growth. My wife and I do believe in God and when went home that night we prayed and cried for hours. We then decided to name our child Jonathan after me, because Jonathan means gift from God.
After we heard Nathan cry for the first time we were told that he was being taken to the NICU for observation and treatment. I got to hold Nathan for a brief moment and showed him to my wife. He was the most precious thing I had ever seen. My wife was not able to hold him and she would not be able to for three days. The next day when I went to go see Nathan I discovered that Nathan could not move his arms, he had cataracts in both eyes, was not able to feed properly, could not move his legs, had deformed feet, displaced hips, and had Hemophilia severe factor 9. My wife and I were scared for our baby but where just thankful to God for the blessing of our baby.
Nathan would spend the course of the next 5 weeks in the NICU at USA women’s and children. Over this time we would learn that our precious angel suffered from a rare genetic disorder called Rhizomelic Chrondrodysplasia Punctata or RCDP for short that affects about 100 children in the entire world. The first time we googled this disorder I laid on the floor and cried for about an hour. It is commonly referred to as “Killer Dwarfism” and children with this disorder have a life expectancy of less than year. It affects any and all aspects of the children’s life it affects vision, bone growth, joints development, organ function, organ growth, mental health, and overall growth and development. It is a grim outlook that can be overwhelming and hard to handle.
Once we wrapped our heads around our new reality my wife and I made some tuff decisions. One of which was my wife giving up her career to stay at home and provide the full time care that Nathan needs. I left my office job to go back to being a police officer so I would be able to be off more and go to the never ending doctors appointments.
The past 10 months has been an emotional rollercoaster. Nathan has already had 3 surgeries and is preparing to have his 4th. Nathan has already had a g tube put in to help him feed and two cataracts removed. He is having another cataract surgery this month as well as glaucoma surgery. Nathan also has physical therapy 3 times a week, vision therapy once a month, occupational therapy once a month, and sees a series of doctors and specialist from Mobile, Biloxi, Pascagoula, and New Orleans. It has been a long and trying road but with the blessing from God and the hard work and dedication of many nurses, doctors, specialist, and especially my wife little Nathan now has limited movement of his arms, can move his legs, can say a few words, has much better vision, and can almost sit up and roll over all on his own.
Nathan is our precious little angel and we along with his grandparents and supportive church family love him dearly. He is a happy baby who loves to play, smile and laugh. He loves new sights, sounds, and textures and is becoming very animated with his interactions. We are truly blessed to have him in our lives and although we pray every day for a cure we love him just the way he is and are so proud of how far he has come and how he continues to move forward every day.
We have started this go fund me account to help raise money for Nathan’s continuous medical expenses that are not covered by insurance, as well as to help pay for a new trail and treatment that is being offered in Delaware. This trial and treatment has the possibility to improve every aspect of Nathan’s life going forward. This trial will involve many treatments and many extended stays in Delaware which is a long way from our small town in Alabama.
Thank you so much for taking time to read about our little angel and may God bless you and your family.
After we heard Nathan cry for the first time we were told that he was being taken to the NICU for observation and treatment. I got to hold Nathan for a brief moment and showed him to my wife. He was the most precious thing I had ever seen. My wife was not able to hold him and she would not be able to for three days. The next day when I went to go see Nathan I discovered that Nathan could not move his arms, he had cataracts in both eyes, was not able to feed properly, could not move his legs, had deformed feet, displaced hips, and had Hemophilia severe factor 9. My wife and I were scared for our baby but where just thankful to God for the blessing of our baby.
Nathan would spend the course of the next 5 weeks in the NICU at USA women’s and children. Over this time we would learn that our precious angel suffered from a rare genetic disorder called Rhizomelic Chrondrodysplasia Punctata or RCDP for short that affects about 100 children in the entire world. The first time we googled this disorder I laid on the floor and cried for about an hour. It is commonly referred to as “Killer Dwarfism” and children with this disorder have a life expectancy of less than year. It affects any and all aspects of the children’s life it affects vision, bone growth, joints development, organ function, organ growth, mental health, and overall growth and development. It is a grim outlook that can be overwhelming and hard to handle.
Once we wrapped our heads around our new reality my wife and I made some tuff decisions. One of which was my wife giving up her career to stay at home and provide the full time care that Nathan needs. I left my office job to go back to being a police officer so I would be able to be off more and go to the never ending doctors appointments.
The past 10 months has been an emotional rollercoaster. Nathan has already had 3 surgeries and is preparing to have his 4th. Nathan has already had a g tube put in to help him feed and two cataracts removed. He is having another cataract surgery this month as well as glaucoma surgery. Nathan also has physical therapy 3 times a week, vision therapy once a month, occupational therapy once a month, and sees a series of doctors and specialist from Mobile, Biloxi, Pascagoula, and New Orleans. It has been a long and trying road but with the blessing from God and the hard work and dedication of many nurses, doctors, specialist, and especially my wife little Nathan now has limited movement of his arms, can move his legs, can say a few words, has much better vision, and can almost sit up and roll over all on his own.
Nathan is our precious little angel and we along with his grandparents and supportive church family love him dearly. He is a happy baby who loves to play, smile and laugh. He loves new sights, sounds, and textures and is becoming very animated with his interactions. We are truly blessed to have him in our lives and although we pray every day for a cure we love him just the way he is and are so proud of how far he has come and how he continues to move forward every day.
We have started this go fund me account to help raise money for Nathan’s continuous medical expenses that are not covered by insurance, as well as to help pay for a new trail and treatment that is being offered in Delaware. This trial and treatment has the possibility to improve every aspect of Nathan’s life going forward. This trial will involve many treatments and many extended stays in Delaware which is a long way from our small town in Alabama.
Thank you so much for taking time to read about our little angel and may God bless you and your family.
Organizer
Mary Stewart-Blackmon
Organizer
Bay Minette, AL
