Kylie-Ann Warrior Princess
Donation protected
Meet Kylie-Ann, our warrior princess.
Kylie-Ann was born in August 2015. Shortly after birth x-rays were taken and discovered 2 fractures. Doctors explained that Kylie-Ann has a rare genetic disorder called Osteogenesis Imperfecta (OI), aka Brittle Bone Disease. Basically there is a defect in the collagen that makes her bones weak and break easily (since it is genetic, simply giving her milk/calcium will not help). Breaks can happen at any time and without reason, just hitting her arm or leg slightly can cause a fracture. So far Kylie-Ann has had 10 fractures and is only 3 1/2 months old. She is currently on a medication called zoledronic acid that helps put calcium in the bones to make them stronger. At the moment she gets an infusion of this monthly and will later be every 3 to 6 months. This is not a cure, but it is said to help reduce the amount of fractures she will have in the future.
There are many different types of OI and more are being discovered as time goes on. As of now doctors are unsure what type she has. What we do know is she has bowing in her legs and arms, she will most likely be of short stature, scoliosis is a possibility, and we are unsure if she will ever be able to walk. There is possibly surgery in her future that can hopefully help her walk, but this is a ways down the road.
Kylie-Ann is seen by many specialists and has doctors appointments ranging from every week to at least once a month and more if she has a fracture. She has physical therapy and occupational therapy that switch off every other week to help with muscle strength since weak muscles is also a part of her disorder.
There are many things that can help make life easier for Kylie-Ann such as splinting materials to have at home to treat her fractures immediately (a box of 10 splints is roughly $200, not to mention ace wraps, gauze, and medication) as well as equipment for physical therapy and eventually a wheelchair. Unfortunately insurance only covers so much making it hard to give Kylie-Ann everything she deserves. We are opening this fund to cover Kylie-Ann's medical costs, travel expenses for appointments, and home modifications for now and the future.
At only 3 1/2 months old she is stronger than anyone I know and manages to be a happy baby with a smile on her face even with the fractures and pain she has to go through. She truly is our warrior princess.
Kylie-Ann was born in August 2015. Shortly after birth x-rays were taken and discovered 2 fractures. Doctors explained that Kylie-Ann has a rare genetic disorder called Osteogenesis Imperfecta (OI), aka Brittle Bone Disease. Basically there is a defect in the collagen that makes her bones weak and break easily (since it is genetic, simply giving her milk/calcium will not help). Breaks can happen at any time and without reason, just hitting her arm or leg slightly can cause a fracture. So far Kylie-Ann has had 10 fractures and is only 3 1/2 months old. She is currently on a medication called zoledronic acid that helps put calcium in the bones to make them stronger. At the moment she gets an infusion of this monthly and will later be every 3 to 6 months. This is not a cure, but it is said to help reduce the amount of fractures she will have in the future.
There are many different types of OI and more are being discovered as time goes on. As of now doctors are unsure what type she has. What we do know is she has bowing in her legs and arms, she will most likely be of short stature, scoliosis is a possibility, and we are unsure if she will ever be able to walk. There is possibly surgery in her future that can hopefully help her walk, but this is a ways down the road.
Kylie-Ann is seen by many specialists and has doctors appointments ranging from every week to at least once a month and more if she has a fracture. She has physical therapy and occupational therapy that switch off every other week to help with muscle strength since weak muscles is also a part of her disorder.
There are many things that can help make life easier for Kylie-Ann such as splinting materials to have at home to treat her fractures immediately (a box of 10 splints is roughly $200, not to mention ace wraps, gauze, and medication) as well as equipment for physical therapy and eventually a wheelchair. Unfortunately insurance only covers so much making it hard to give Kylie-Ann everything she deserves. We are opening this fund to cover Kylie-Ann's medical costs, travel expenses for appointments, and home modifications for now and the future.
At only 3 1/2 months old she is stronger than anyone I know and manages to be a happy baby with a smile on her face even with the fractures and pain she has to go through. She truly is our warrior princess.Organizer
Brittnee Gregson
Organizer
Elk Grove, CA