I want to personally thank everyone who is taking the time to read this LFEBridge page. The Williams-Smith family, an amazing and caring family have been given some hard news about their youngest child, Indika. She was diagnosed with a very rare bone disease called Perthes in April of 2024 but they have been dealing with doctors and physical therapy for about 6 months before the official diagnosis. A little bit about the disease; Perthes is a very rare bone disorder and not a lot is known about it. Indie is helping in this research because she is now a patient in the study group. Perthes typically affects men so for Indie to have it makes it an even more rare case. Perthes is when the hip's blood flow is disrupted and avascular necrosis happens (the ball of the hip starts dying). Typically this shows up in the ages of 4-10 but can be seen in 2-12 years as well. The disease is time sensitive and the longer it goes undiagnosed the less chance you have of re-growth without medical intervention. Unfortunately, in Indie's case, only 30% of her femoral head has blood flow to it. The other 70% has experienced death of the tissues and has entered the fragmentation stage. Meaning, it is no longer rounded it is extremely flat. With this advanced stage of her disease, her femoral head was tipping out of the socket by 30%. Indie has had 2 surgeries since June already to try and help correct and start the regrowth of the hip. Her first surgery was an "Adductor Tenotomy". This was to try and restore mobility to the hip. The surgeons went in and cut the adductor tendon to open up mobility. After the first surgery, she was placed in a bilateral Petrie bracing system. Which is a hip-to-ankle brace on each leg with a connecting bar in the middle that keeps the legs straight and the hips in the abducted position (v-shape) for 23.5 hours a day. She has been wheel-chair bound since that surgery. The second surgery Indie just had on July 10th was her most invasive and PAINFUL surgery. This surgery was an "Osteotomy Femur Intertrochanteric" - Indika's femur has been broken, a metal plate and 4 large screws have been placed along her femur bone where the brake had to happen. The plate and screws will keep the femoral head in the socket, allowing it to be "molded" into the round shape that is needed. Or so the hope is. With the femur being broken it creates a LOT of blood flow to the area, and the idea is that with increased blood flow it will reach the hip as well, which will then kick start the growth of the femoral head. The main goal at the moment is to pass the "fragmentation stage", which Indie has started, and then get into the regrowth stage. This approach is a very aggressive one but, is necessary because it is such a time-sensitive type of condition, and it is the only option they have to give Indika a shot at having a good outcome with the regrowth of the femoral head. The whole process hopefully will take only 2-3 years. As opposed to the other option of being non-weight bearing, wheel-chair bound, for the next 8 or so years. This disease is not "Life-threatening" but it will forever change the way this outstanding young lady lives her life. She was an extremely talented gymnast and just so carefree and energetic. But this disease has stolen that from her, it is stealing her independence and her way of life as she knew it. We all know life right now is hard, so this family having to travel back and forth to Seattle Childrens Hospital so often is just an extra cost that is a real strain. On top of missing work while traveling to and from doctors appointments, surgeries, and adding in all the cost of medical bills, you can imagin how expensive things get. If you can help in any way I know this family would be forever grateful! If you want to donate but don't want to use this page Kim (Indika's mom) has an account at Credit Union 1 under the name Kimberly Smith and it is labeled as "Indika". Thank you all for taking the time to read this and to share Indika's story!
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