Olivia Rose's Medical Fund

Olivia Rose was born June 17th, 2008. Olivia was born with Myelomeningocele, which is one of the worst forms of Spina Bifida. Along with the Spina Bifida, Olivia has Chiari Malformation (her brain tissue is growing into her spine), she has no bowel or bladder control and needs to be catherized every 3 hours and we are currently working on a bowel program which includes a mixture of diffrent medicines. Olivia was also born with her left hip not attached and club feet. We also received a recent diagnosis of junior Rheumatoid Arthritis that is currently in her back, ankles and one of her eyes. She just had blood tests to find out if she has the type of arthritis that causes blindness. Olivia has had many surgeries in the short six years of her life and we have many more to go. A year and a half ago, one of her major surgeries she had was the attachment of her hip to her body with a brand new metal hip and they also  put metal rods in both hips and pelvis. During this time we found out that olivia was given the wrong blood during her spinal closure when she was an infant and now she has two diffrent types of blood running through her that caused antibodies to form. Whenever she needs a blood transfusion, which is often, they have to specially make her blood. In the fall, Olivia will undergo another major surgery. Dr Dias, Olivias Orthopedic doctor, will break the bones in her leg and reset them with rods to straighten them and make them stronger. With her new diagnosis of the rheumatoid arthritis, it does affect her pain wise. During the cold months, Olivia is in constant pain and cries alot. Due to all the other medicines she has to be on for her kidneys, bladder, ect. she can not take any arthritis medicine and since she has no bowel control and gets constipated easily, they can not giver her over the counter medicie either to help control the pain. The only option we have is to give her injections into her joints. olivia undergoes multiple surgeries throughout the years and recquires alot of medical equipment and medicines. Alot of which our insurance does not cover. I couldnt even tell you how many diapers we have to go through in a week due to the fact that she has no bladder control and constantly has a wet diaper. All of Olivias doctors are located in Chicago, so it is a hike for us for each appointment. Olivia is part of Luries Children Hospital and Hope Hospital. We are starting Olivia Rose's Medical fund to help with all her medical bills, prescriptions, catheters, diapers and wipes and her medical equipment such as a bath chair, bars for the bathroom and eventually a bathtub that is handicapped accessible and also one with jets to help her muscles and bones especially with our cold winters. she will also require wheelchairs throughout her life and now with her new diagnosis of the arthritis she may eed other equipment such as walker, arm crutches ect. She also requires to wear HKAFOs whic is hip. knee, ankle, foot orthotics. Our insurance covers one pair for the year but since Olivia has abnormal growth for a child with Spina Bifida she sometimes needs two to three pairs a year which is all out of pocket. We thank you from the bottom of our hearts for your support, love and kind words you give us daily. Each of you put a smile on Olivia's face daily. We truly appreciate everything you all do for us. Thank you!!!

Donations

  • Alan & Barb Burkhard 
    • $250 
    • 48 mos
  • Wei Shissler 
    • $50 
    • 48 mos
  • Vickie Sampson 
    • $100 
    • 48 mos
  • Gingerich Family 
    • $100 
    • 48 mos
  • Benjamin Nau 
    • $100 
    • 48 mos
See all

Organizer

John Lundahl 
Organizer
Wheaton, IL
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