Hello and thank you for visiting our Go Fund Me for, Riley’s PFFD Journey. My niece Riley McMillin was diagnosed with a rare condition called Proximal Femoral Focal Deficiency, PFFD, affecting the development of her right hip and femur. This rare condition was discovered at only 23 weeks gestation. At this point Riley’s parents were given an option to terminate their pregnancy. For my sister Kasia and her husband Tynan this was not an option. We want to help Riley and her parents with the costs associated with travelling internationally for major multiple surgeries. The first surgery is scheduled for April 7th, 2021 in Baltimore, Maryland, USA at the Sinai Hospital with Dr. Standard.

PFFD is a rare condition that affects approximately 1 in every 200,000 births. Within PFFD, there are 14 different diagnosis. Riley is diagnosed with Type D PFFD with a more specific diagnosis of CFD (Congenital Femur Deficiency) Riley is missing her hip bone and the ball at the end of her femur, as well as an under developed femur bone, measuring only half of her normal leg. There are no treatment options in Canada for Riley’s degree off PFFD/CFD therefore they will be travelling to Baltimore, MD, USA, to undergo her first surgery. They are leaving April 5th for Riley’s SUPER hip operation scheduled for the 7th. SUPER, is an acronym for Systematic Utilitarian Procedure for Extremity Reconstruction. This will involve constructing Riley a new hip as well as a ball joint on her femur to better stabilize her and get her ready for a prosthetic that she can actually walk with. Once her hip heals she will continue treatment to start the leg lengthening procedures which often times require an external fixator that can potentially help the bone to grow.

Riley is the most spunky toddler out there and a complete daredevil! Nothing can stop this girl. Not even PFFD. After being diagnosed her doctors speculated whether she would have any mobility or not due to not having a hip socket or joint connecting to her underdeveloped femur. Riley is almost 2 years old and has defied that speculation. She has learned to crawl, climb and stand on her own, with her own modifications of course! Walking is still difficult but with her determination and strong tippy toes on her little leg she gets where she’s going to. Now we want to help her family get where they need to go.

Although the family is grateful that Manitoba Health will cover the actual cost of the surgeries, which is about half a million dollars, there are countless additional costs associated with travelling to another country for treatment. MB health is only covering the cost of 1 economy flight for 1 parent per year. They will have to travel to Baltimore twice this year alone. Other than that, nothing else is covered. They are responsible for accommodations, travel, car rental, food, rehabilitation therapy, and flights. Not to mention facing the complications that COVID restrictions hold in both the USA and Canada. Once they arrive in Baltimore they will have to purchase everything from toys to a stroller, to keep Riley comfortable and feeling like she’s at home. Due to COVID the hospital cannot supply Riley with and items for her stay outside of the hospital. They will be in hospital housing for only 3 days then will be in a hotel, at their cost, as they’re to be in Baltimore for 2 weeks, if not longer for her recovery and rehabilitation. Then coming home causes more financial strain as there are only 4 designated airports for international flights, Winnipeg not being on that list. Riley and her parents will need to stay in a designated airport hotel once arriving in Canada which we all know could be $2000/ person alone. This is not a pleasure trip. This travel is essential for Riley’s quality of life. Although Rileys condition is not life threatening, it can be severely detrimental to her growth and stability if not corrected early, especially in her case with her specific type of PFFD. We want to make this trip, which will be the first of many, feel like home for my niece.

Thank you for your time and stay tuned for updates on Riley’s PFFD Journey here on Go Fund Me, Facebook Page and Instagram, under the same name @rileyspffdjourney