Grow RiRi Grow

Hi, my name is Aria, but you can call me RiRi. I am a fierce four-year-old. I'm mighty and brave!! Come watch me grow!

Aria was born with a rare, non-hereditary condition called Proximal Femoral Focal Deficiency (PFFD), also known as Congenital Femoral Deficiency (CFD). In CFD the upper part of the femur bone (in the thigh near the hip) is either malformed or missing, causing one leg to be shorter than the other. In Aria’s case, her right leg is the one that is affected. The treatment options range from amputation to limb lengthening. After careful consideration and much prayer, we’ve decided to proceed with the limb-lengthening surgery. This will allow Aria to have both legs at equal length by her teenage years! She has been very blessed to be under the care of physicians at The Paley Institute in West Palm Beach, FL. Aria will have a handful of procedures throughout her childhood until she has reached her maximum height.

Last year she had her first procedure, the “SUPERHip” surgery. “SUPER” is an acronym for “Systematic Utilitarian Procedure for Extremity Reconstruction”. It is a surgical procedure created by Dr. Paley that corrects bone and soft tissue deformities to ensure that the leg is stable enough to lengthen. Aria is currently at the beginning stages of her first lengthening and the goal is to lengthen her leg 8cm. Please utilize the following link to learn more about the procedure: https://paleyinstitute.org/centers-of-excellence/limb-lengthening-world-renowned-surgeons/#/

The lengthening process takes about 4 months. Aria had her first procedure on March 16 th 2023, in which they placed an external fixator onto her leg. She is required to do physical therapy 3 times a day, 7 days a week. The therapy has been challenging and very painful for her, but she has an amazing resolve for a 4 year old! West Palm Beach is over 2 1/2 hours from our home in Orlando. Because Aria’s therapy sessions have to be done there, we have been put into a position where we are currently maintaining two households (Our home in Orlando and a Rental in West Palm Beach). The expenses that have accumulated during this time have been overwhelming. Beyond all of the medical expenses, the costs of living daily in West Palm Beach have been extremely challenging.

We are asking for financial assistance to help offset the medical costs of her procedure and future procedures, as well as meals, lodging, and transportation. We want to thank everyone who has reached out with prayers and positive words of encouragement. We also want to thank all of those who are cheering Aria on as she walks through this adventure in her life. #growririgrow

Follow Aria's adventures on IG supertwins_j_a