Amelia was diagnosed with Multiple Osteochondromas just before her 3rd birthday. Only 1 in 50,000 children are born with this. Jason and Sarah were terrified as the doctor showed them her x-rays. She has tumors in every joint varying in sizes and severity. Amelia had her first surgery April 29th, 2015 to remove the large tumor on her left shoulder. It was causing her pain every time someone accidentally bumped her and it was difficult for her to wear her backpack at school. Amelia goes in for x-rays every 6 months to monitor the growth of these tumors and determine if they are impairing movement or growth. The surgeon confirmed that her left forearm would need surgery summer of 2016 because the radius is significantly shorter than the ulna and her wrist is beginning to show signs of fatigue and is compensating by turning outward. Her elbow is also compensating by dislocating when she rotates her hand.
They will surgically repair her right hip joint at the same time as the forearm surgery this summer. She has a very large tumor that is consuming the space needed for full motion of the hip joint. Her right leg will only bend just past sitting position. The surgeon says with where the tumor is located there is really very little we can try. They will surgically cut a wedge out of her femur and close the gap to create the space needed to improve mobility. Amelia recently had a spinal MRI at the Marshfield Clinic. Only 10% of children with multiple osteochondromas have tumors in their spine. Amelia has two that have the surgeons concerned. The one on the C3 vertebrae is being removed on March 11th. It is putting pressure on her spinal cord and needs to be removed before it can cause any damage. The removal of the C3 tumor is necessary in order to perform the surgeries this summer. They will continue to observe the tumor on the T8 vertebrae.
Surgeons are keeping a close eye on her knees and left ankle as well. Her fibula (little bone) is migrating outward due to the large tumors on the tibia (large bone) in the knee joints. Her left ankle also shows large tumors that will create pain or trouble with mobility. Jason and Sarah are worried about not having enough time between surgeries to save up enough money to pay for these medical bills. It all seems to be happening so fast. Without these surgeries Amelia will surely have some disabilities that prevent her from doing day to day activities. They’ve applied for assistance through social security, since she was born with this condition, but were told they make $900 too much on their annual gross income to qualify for any assistance. Another program told them she wasn’t disabled enough to qualify for a supplemental health insurance that would help with what their primary insurance doesn’t cover, but could reapply at a later date if her mobility decreases.
If you would like to help in any way we have a GoFundMe account set up for Amelia. www.gofundme.com/helpmillieout (
http://www.gofundme.com/helpmillieout)
