Bent, Not Broken!
Donation protected
Meet Sophie. She is a smart, vibrant and caring girl that lights up any room she walks into with her smile and sweet personality. She is so talkative and treats every person she meets as though they’re long time friends. She is Jayson and Nicole’s amazing little miracle, and we all never thought that an 8 year old girl would be one of the strongest people we know while standing only 40 inches tall and weighing 36 pounds. Her sister says she is the best big little sister.
Things started out rough for Sophie. She was born with a bell-shaped rib cage, which means the top half of her ribs are about half the size they should be and constrict her breathing. When she was born she spent 3 weeks in the N.I.C.U., and came home on oxygen and a feeding tube. She stayed on the oxygen for many years after coming home but now only needs it when she’s really sick. She has had multiple genetics tests done throughout her life to figure out why she was born with this type of skeletal dysplasia and what it may be linked to, but none of the test have provided any answers. The next step the Dr wants to test is her parents and her together to do a full DNA and Gene map.
She has always been small for her age, but 2 years ago they did endocrinology testing and they discovered that she has a growth hormone deficiency and her pituitary gland doesn’t produce the right amount of hormones. She now gets growth hormone shots every night and her hormone levels are much better. She’ll continue those shots for many years to come.
That’s not where things end though, unfortunately. She went to the Dr. for a sore throat and to their surprise, he informed them she had scoliosis and it was pretty bad. He said she had a 31 and 44 degree “S” curve. They were so shocked that it had never been noticed on any x-rays before but with everything else going on, it wasn’t hard to be distracted. She has since been fitted for a brace that doesn’t really correct it, but keeps it from getting worse to avoid surgery. But it is hard for her to wear the brace since it has to squeeze so tight to keep things straight and she already has constricted breathing from her rib cage being deformed. She is right on the edge of what they would consider doing surgery on, and we all want to avoid that desperately.
They’ve researched a lot of things in the past year, and recently came across a clinic in California that specializes in reducing and correcting the angle of her curve and getting to the underlying problem of what is causing the curving.
It would be a 3 week trip out there initially, and then they would have to go out there every 3 months for a week. This treatment is not covered by insurance, so they would have to pay for all the specialized braces, equipment and treatment up front, not to mention the travel costs for 3 weeks. They checked around and there is nobody else that does the same thing. They have amazing results and her parents feel whole heartedly that it will help her tremendously. It is so difficult to watch her struggle with walking for extended periods and suffering from back and joint pain. Her curve is severe enough to angle her pelvis and make one leg seem shorter than the other and she walks with what looks like a limp.
Your donations will help them be able to take her to California to get the help that she truly needs.
Her new specialized brace will cost $6,500. Her neuro elongation table will cost $4,500. The treatment for the 3 week, stay and the rest of the entire year will be $21,250. They would be amazingly grateful for any donation you can give as it will help them get that much closer to being able to help this amazing little angel out.
Thank you so much for taking the time to read about this amazing little lady, I sincerely appreciate it.
Things started out rough for Sophie. She was born with a bell-shaped rib cage, which means the top half of her ribs are about half the size they should be and constrict her breathing. When she was born she spent 3 weeks in the N.I.C.U., and came home on oxygen and a feeding tube. She stayed on the oxygen for many years after coming home but now only needs it when she’s really sick. She has had multiple genetics tests done throughout her life to figure out why she was born with this type of skeletal dysplasia and what it may be linked to, but none of the test have provided any answers. The next step the Dr wants to test is her parents and her together to do a full DNA and Gene map.
She has always been small for her age, but 2 years ago they did endocrinology testing and they discovered that she has a growth hormone deficiency and her pituitary gland doesn’t produce the right amount of hormones. She now gets growth hormone shots every night and her hormone levels are much better. She’ll continue those shots for many years to come.
That’s not where things end though, unfortunately. She went to the Dr. for a sore throat and to their surprise, he informed them she had scoliosis and it was pretty bad. He said she had a 31 and 44 degree “S” curve. They were so shocked that it had never been noticed on any x-rays before but with everything else going on, it wasn’t hard to be distracted. She has since been fitted for a brace that doesn’t really correct it, but keeps it from getting worse to avoid surgery. But it is hard for her to wear the brace since it has to squeeze so tight to keep things straight and she already has constricted breathing from her rib cage being deformed. She is right on the edge of what they would consider doing surgery on, and we all want to avoid that desperately.
They’ve researched a lot of things in the past year, and recently came across a clinic in California that specializes in reducing and correcting the angle of her curve and getting to the underlying problem of what is causing the curving.
It would be a 3 week trip out there initially, and then they would have to go out there every 3 months for a week. This treatment is not covered by insurance, so they would have to pay for all the specialized braces, equipment and treatment up front, not to mention the travel costs for 3 weeks. They checked around and there is nobody else that does the same thing. They have amazing results and her parents feel whole heartedly that it will help her tremendously. It is so difficult to watch her struggle with walking for extended periods and suffering from back and joint pain. Her curve is severe enough to angle her pelvis and make one leg seem shorter than the other and she walks with what looks like a limp.
Your donations will help them be able to take her to California to get the help that she truly needs.
Her new specialized brace will cost $6,500. Her neuro elongation table will cost $4,500. The treatment for the 3 week, stay and the rest of the entire year will be $21,250. They would be amazingly grateful for any donation you can give as it will help them get that much closer to being able to help this amazing little angel out.
Thank you so much for taking the time to read about this amazing little lady, I sincerely appreciate it.
Organizer and beneficiary
Wendy Rice Cornia
Organizer
West Jordan, UT
Nicole Peters Gray
Beneficiary