Gracie Peterson
Donation protected
Gracie is 8 years old, and was born with a condition called Fibular Hemimelia. In Gracie,this presents as her right leg being shorter then her left, and her foot stopping at the third toe. She does not have the last two toes or that width of her foot. This is an extremely rare birth defect (1/40,000). To put in perspective, there are 4 million births in the United States alone, in one year. Out of that 4 million, only 100 children will be born with FH.
The most common treatment method is to amputate the limb from the knee down. However, after over 3 specialist consults, we were told that we could either amputate, or reconstruct and lengthen her leg. Since Gracie had such a long leg and enough of an ankle/foot structure to work with, we decided on a specialist in Baltimore, Maryland who is considered a worldwide expert in treatment of her condition and lengthening.
At 8 years old, Gracie has already had 12 surgeries. One on her heart here in Arizona, and 11 on her thigh and lower leg and foot. She has had a super ankle surgery where the put an external fixator on her and tried to correct her ankle (completely reconstructed) and the bow in her tibia. She has had numerous plates put in her femur and tibia to guide her growth as her leg automatically grows out the wrong direction. She has had tendons transferred, her tibia bone cut through and manually rotated because it was naturally rotating in the wrong direction (de-rotational osteotomy), she has had a super knee where they took her IT band and used it to give her the ACL and PCL that she was missing, along with moving her knee cap into the correct position and cutting through and re aligning her ankle, and many other surgeries.
Gracie has done multiple rounds of physical therapy and has had to learn how to walk again after most of her surgeries. She constantly preservers and triumphs over her condition and has the spirit and personality of a warrior. Most of the time, FH does not slow her down. While she was recovering in PT from the super knee surgery she asked about playing basketball and played on a team a month after being cleared by PT. She runs and plays at school and really is unstoppable. She does experience all the emotions, fears and stress that come with surgeries and recoveries, with being different then her peers and with having a brace and huge lift in her shoes, (like most 2nd graders would), but she always proves to be stronger then the fear and rises above.
Because the best care for her condition is located in Baltimore, we are fundraising for her upcoming lengthening surgery. There are local doctors who could do this surgery, but they maybe see 2 or 3 cases every couple of years, where Gracie’s surgeon see’s 10-15 cases a day. If an inexperienced doctor made a mistake, our only recourse would be to amputate. That is why we put so much into making it a priority to get her the best care possible. The lengthening surgery will be her biggest and most invasive surgery yet, as they are fixing 3 other issues at the same time. Listed below is what we anticipate this surgery looking like:
*Internal Lengthening of the femur AND tibia at the same time. (They will cut straight through both the thigh and leg bone and then drill in plates and nails that will slowly pull the bone apart with a machine and magnet on the outside of her leg. They pull will be anywhere from .5 to 1 mm a day to trigger the body to regenerate new bone for the break). We will be making the pulls of both bone structures for 10 weeks. We will be required to leave in early May and spend the entire 10 weeks in Baltimore, without returning home.
*After 10 weeks of slowly pulling the bone apart, we will have to wait for her new bone to consolidate, approximately another 8-12 weeks, if without complications.
*If the muscles, skin, joints, tendons and ligaments do not stretch as quickly as the bone is being pulled apart, it will slow the entire process down and will take more than 10 weeks to lengthen.
*Gracie will be wheel chair and walker bound the entire time, with a max ability of weight bearing at 50%.
*Physical therapy is 2 hours a day (both land and water), 5 days a week, and starts approximately 1 week after surgery, continuing until a few months after another surgery to remove the hardware.
*Start to finish the process is 8-12 months long.
*Gracie will also be having both her femur and her tibia repositioned because they are bowed, and then her lower leg will be realigned because it is growing incorrectly.
The most common treatment method is to amputate the limb from the knee down. However, after over 3 specialist consults, we were told that we could either amputate, or reconstruct and lengthen her leg. Since Gracie had such a long leg and enough of an ankle/foot structure to work with, we decided on a specialist in Baltimore, Maryland who is considered a worldwide expert in treatment of her condition and lengthening.
At 8 years old, Gracie has already had 12 surgeries. One on her heart here in Arizona, and 11 on her thigh and lower leg and foot. She has had a super ankle surgery where the put an external fixator on her and tried to correct her ankle (completely reconstructed) and the bow in her tibia. She has had numerous plates put in her femur and tibia to guide her growth as her leg automatically grows out the wrong direction. She has had tendons transferred, her tibia bone cut through and manually rotated because it was naturally rotating in the wrong direction (de-rotational osteotomy), she has had a super knee where they took her IT band and used it to give her the ACL and PCL that she was missing, along with moving her knee cap into the correct position and cutting through and re aligning her ankle, and many other surgeries.
Gracie has done multiple rounds of physical therapy and has had to learn how to walk again after most of her surgeries. She constantly preservers and triumphs over her condition and has the spirit and personality of a warrior. Most of the time, FH does not slow her down. While she was recovering in PT from the super knee surgery she asked about playing basketball and played on a team a month after being cleared by PT. She runs and plays at school and really is unstoppable. She does experience all the emotions, fears and stress that come with surgeries and recoveries, with being different then her peers and with having a brace and huge lift in her shoes, (like most 2nd graders would), but she always proves to be stronger then the fear and rises above.
Because the best care for her condition is located in Baltimore, we are fundraising for her upcoming lengthening surgery. There are local doctors who could do this surgery, but they maybe see 2 or 3 cases every couple of years, where Gracie’s surgeon see’s 10-15 cases a day. If an inexperienced doctor made a mistake, our only recourse would be to amputate. That is why we put so much into making it a priority to get her the best care possible. The lengthening surgery will be her biggest and most invasive surgery yet, as they are fixing 3 other issues at the same time. Listed below is what we anticipate this surgery looking like:
*Internal Lengthening of the femur AND tibia at the same time. (They will cut straight through both the thigh and leg bone and then drill in plates and nails that will slowly pull the bone apart with a machine and magnet on the outside of her leg. They pull will be anywhere from .5 to 1 mm a day to trigger the body to regenerate new bone for the break). We will be making the pulls of both bone structures for 10 weeks. We will be required to leave in early May and spend the entire 10 weeks in Baltimore, without returning home.
*After 10 weeks of slowly pulling the bone apart, we will have to wait for her new bone to consolidate, approximately another 8-12 weeks, if without complications.
*If the muscles, skin, joints, tendons and ligaments do not stretch as quickly as the bone is being pulled apart, it will slow the entire process down and will take more than 10 weeks to lengthen.
*Gracie will be wheel chair and walker bound the entire time, with a max ability of weight bearing at 50%.
*Physical therapy is 2 hours a day (both land and water), 5 days a week, and starts approximately 1 week after surgery, continuing until a few months after another surgery to remove the hardware.
*Start to finish the process is 8-12 months long.
*Gracie will also be having both her femur and her tibia repositioned because they are bowed, and then her lower leg will be realigned because it is growing incorrectly.
Organizer
Karen Farrish
Organizer
Gilbert, AZ