Hello! We would like to introduce our niece, Jolee! We're writing this to let the world in on the radiant and special little girl she truly is. Jojo is an endlessly happy toddler with hair to match her fiery spirit, we can certainly say that she knows no strangers! Since she grasped the concept of waving, any passerby quickly became a friend enamored by her warm and inviting energy. "Happy to ya!", she will pleasantly sing in your direction with her beaming smile just begging for a smile in return. You probably wouldn't notice anything 'different' about Jolee unless she has her lifted shoes on. If you did happen to tell her you like her shoes, she would confidently want to tell you, "these my 'big ones' for my little leg!". After any interaction with a new person, she would happily announce, "that's my friend!", and she would certainly mean it. She has open arms to the world and helps people around her see things in a brighter light as well. She is a unique little girl in more than one way. The other aspect that makes Jolee unique was first seen by an ultrasound tech during her 20 week anatomy scan. It was then that her mom, Lauren, heard the news that no parent expects to hear after previous appointments had shown nothing but good health. It was very apparent there was a length discrepancy between her femurs. One measured correctly at 20 weeks gestation, whereas the other was a little over half the expected length measuring 13 weeks. With a somber face, the doctor delivered this news without being able to offer any explanation or expectation of what was to come. Her first specialist appointment noted no other bone formation issues, but was also unable to give any explanation. From there, they were sent to see further specialists at the UofM hospital. A diagnosis of Proximal Femoral Focal Deficiency (PFFD) was given to the baby they then knew would be their little girl. PFFD is rare and affects about 1 in every 200,000 children. It is a birth defect in which the upper part of the femur bone is either malformed or missing, causing one leg to be shorter than the other. This difference causes functional problems with a child's ability to walk and can stress other bones or joints in the body in an effort to compensate. The severity and treatment of PFFD varies from child to child and fortunately, at this point in time, Jolee’s condition does not require any hip surgery! Currently Jolee is almost 3 years old and has about a 2.5 inch discrepancy between her two femurs. Her team of specialists at UofM have been monitoring her development since pregnancy and are now confident in beginning her leg-lengthening procedures! Shortly after her 3rd birthday this November, Jolee will begin her first round of leg lengthening surgery. The best option for lengthening at this time is invasive surgery where the bone is cut, and an internal rod with an external fixator is placed to slowly stretch the limb as new bone forms. The external fixator is expected to stay in for about three months to complete the difference of about 2.5 inches. The hospital stay itself is expected to be between 2-3 days with weekly follow ups with her orthopedic surgeon. When this round of lengthening is completed, the device will be removed and the bone will continue to solidify for the next several months. Within a couple years after this initial surgery, another surgery will be required to make Jolee an ACL. The rest of her lengthening journey will be dependent on how fast she grows and how the discrepancy will grow as she does. An estimated second surgery is expected around 12-13 years of age. As you can imagine, even with good insurance, ongoing procedures and specialist appointments of this nature quickly add up to great amounts. Our hopes are to lessen the financial burden of medical bills on their family. By donating anything, sharing this, and following along on Jojo’s journey, you are greatly improving the life of this spunky and loving little girl. Jolee is ready to run and you’re helping her to find her starting line! Venmo: Lauren-Hargraves-55
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