A Cure for Callie
Donation protected
In 2015, my baby girl, Callie was diagnosed with sickle cell disease shortly after birth. In her short life, she has had more than ten hospital admissions related to sickle cell... majority of them being in 2017 alone. In early 2018, we consulted with a local children’s hospital regarding a bone marrow transplant. Although her hematology team and I felt that because of the number of hospitalizations and crisises she had experiences transplant was a great option, doctors at the children’s hospital were very dismissive stating “she’s too healthy for consideration.” In, November, 2018, while bathing she suffered a seizure which tests revealed later that she had had a stroke.
Thankfully, the stroke caused minor she deficiencies affecting her balance and speech which her body (and therapy) quickly corrected. Since then, anti-seizure medication was added to her daily meds along with blood transfusions every 3-4 weeks.
After consults with several doctors, in February, we got amazing news. Advent Health in Orlando accepted her as a bone marrow transplant patient. This surgery will drastically change Callie’s life-curing her of sickle cell disease, increasing her life expectancy and giving her a “normal” childhood free of hospitals, daily medications, constant doctor visits, and physical limitations.
The bone marrow transplant is an intense process, especially for a three year old. There are several doses of strong chemotherapy, hair loss, loss of appetite, nausea, weakness, and obviously the needles and hospital confinement. It requires inpatient hospitalization for a couple of weeks (determined by her team and based on her recovery) after which we will be required to stay in the area for at least three months. Although we live relatively close (1 hour 20 minutes away), the protocols require us to relocate to the area for those three to four months immediately after transplant so that we have quick access to the hospital and her transplant team in the event of complications.
Unfortunately, our insurance provider, Cigna Global, has denied coverage for this surgery at Advent Health. Instead they have suggested we travel south to Miami or north to Gainesville. Neither location is ideal for us. One facility believes she’s too young, the other does not offer the type of transplant she needs. Furthermore, I believe it is in Callie’s (and my) best interest to remain close to home. I believe family visitations will give her some sense of normalcy in an extremely difficult time. In addition to that, my older daughters are in high school. I also need to be close to them for their sense of normalcy. Staying near home allows for my older daughters to visit regularly AND allows me to step away for a break during visits. It’s important to me that Callie is not isolated but surrounded by family.
I have appealed Cigna’s decision and I am awaiting reconsideration. I have been advised that the insurance company’s process is to deny initially and then, in many cases, later approve so we are planning accordingly.
To do this though, we need help. For at least three months, I will be on a leave of absence to care for Callie. I have come to GoFundMe.com to raise funds to offset the expense of temporarily relocating to Orlando, as required for treatment, as well as assist with covering what will hopefully only end up being the insurance deductible. Our goal is to raise $12,500. These funds will specifically be used to provide lodging near the facility for approximately three months (as much as four depending on doctors orders) and Callie’s medical bills associated only with her transplant.
If you are inclined to donate, but have questions or want more information... or want to help in a different way, please feel free to contact me. I’ll gladly provide you with any details or info needed. No offense taken.
Thankfully, the stroke caused minor she deficiencies affecting her balance and speech which her body (and therapy) quickly corrected. Since then, anti-seizure medication was added to her daily meds along with blood transfusions every 3-4 weeks.
After consults with several doctors, in February, we got amazing news. Advent Health in Orlando accepted her as a bone marrow transplant patient. This surgery will drastically change Callie’s life-curing her of sickle cell disease, increasing her life expectancy and giving her a “normal” childhood free of hospitals, daily medications, constant doctor visits, and physical limitations.
The bone marrow transplant is an intense process, especially for a three year old. There are several doses of strong chemotherapy, hair loss, loss of appetite, nausea, weakness, and obviously the needles and hospital confinement. It requires inpatient hospitalization for a couple of weeks (determined by her team and based on her recovery) after which we will be required to stay in the area for at least three months. Although we live relatively close (1 hour 20 minutes away), the protocols require us to relocate to the area for those three to four months immediately after transplant so that we have quick access to the hospital and her transplant team in the event of complications.
Unfortunately, our insurance provider, Cigna Global, has denied coverage for this surgery at Advent Health. Instead they have suggested we travel south to Miami or north to Gainesville. Neither location is ideal for us. One facility believes she’s too young, the other does not offer the type of transplant she needs. Furthermore, I believe it is in Callie’s (and my) best interest to remain close to home. I believe family visitations will give her some sense of normalcy in an extremely difficult time. In addition to that, my older daughters are in high school. I also need to be close to them for their sense of normalcy. Staying near home allows for my older daughters to visit regularly AND allows me to step away for a break during visits. It’s important to me that Callie is not isolated but surrounded by family.
I have appealed Cigna’s decision and I am awaiting reconsideration. I have been advised that the insurance company’s process is to deny initially and then, in many cases, later approve so we are planning accordingly.
To do this though, we need help. For at least three months, I will be on a leave of absence to care for Callie. I have come to GoFundMe.com to raise funds to offset the expense of temporarily relocating to Orlando, as required for treatment, as well as assist with covering what will hopefully only end up being the insurance deductible. Our goal is to raise $12,500. These funds will specifically be used to provide lodging near the facility for approximately three months (as much as four depending on doctors orders) and Callie’s medical bills associated only with her transplant.
If you are inclined to donate, but have questions or want more information... or want to help in a different way, please feel free to contact me. I’ll gladly provide you with any details or info needed. No offense taken.
Organizer
Margie Johnson
Organizer
Ruskin, FL
