I have created this GoFundMe page for my brother and sister Lee and Kari who are facing an extremely difficult time as parents to my beautiful, funny and lovable niece Avery. Avery has been diagnosed with Chiari Malformation and will be going into brain surgery on October 8th.
Lee and Kari shared the following message with their Facebook family and friends on September 11th:
We typically do not turn to Facebook to share our burdens or concerns, we know that each one of you are dealing with your own struggles, but right now Lee and I … and most importantly our sweet angel, Avery, could use your prayers. I’ll try to quickly bring you up to speed …
This summer, at a routine physical exam, our family doctor noticed a curvature in Avery’s spine. He was concerned due to her young age and suggested we see an orthopedic doctor at UIHC. At the beginning of August, we saw the orthopedic doctor and it was confirmed that Avery had Scoliosis. The doctor was concerned about the severity of the curve (after no apparent curve the year before) and determined Avery would need to wear a full-abdominal brace for 14 hours a day. He also wanted to have an MRI administered, to aid in finding the cause of the Scoliosis. Avery had the MRI last Thursday.
On Sunday, the doctor called and informed us that Avery had a rare neurological disease called Chiari Malformation. In some cases, Chiari Malformation could be treated with antibiotics or alternative practices, but due to the severity of Avery’s case she would need surgery.
This afternoon, we met with the neurological surgeon who will be performing the surgery and found out the disease is even more severe than we were mentally and emotionally prepared for. To use layman’s terms, the base of Avery’s skull is curved inward instead of going downward. This has placed incredible pressure on her brain and has caused the lower portion of her brain to be pushed outside of the skull. In addition to displacing a portion of the brain, it has also caused a build-up of spinal fluid in Avery’s body, which has created fluid-filled pockets throughout her spinal cord. Left untreated this would likely lead to paralysis; therefore, we have elected to proceed with surgery.
The doctor performing the surgery is literally the best in the world. He has performed over 5,000 Chiari Malformation surgeries (400 of which are at the level of severity of Avery’s diagnosis). We know she is in the best “humanly” hands possible, but more importantly, she’s in God’s hands.
Avery’s surgery will be on Monday, October 8th. Due to the extensiveness of the surgery, she will be at an increased risk for infection (i.e. Meningitis) and most likely in the Intensive Care unit for 2 days, followed by an additional 4-5 days in the hospital. She’ll have 4-5 weeks of recovery at home following the hospital stay.
Avery knows very little about what is going on. We’ve told her the doctors have found something that needs to be removed and she’ll be asleep when it happens, but beyond that we’re afraid it will only cause her endless worry.
In addition to praying for Avery’s surgery, we also ask that you’d say a prayer that a mass found on her liver during the MRI is nothing to be concerned about. We will see a pediatric gastroenterologist prior to surgery to hopefully determine what the mass is.
We are so grateful for your prayers. We know we are surrounded by people who love us and would do anything to support us. We know God has big plans for Avery and this is all going to be used for His glory.
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10
With much love – Lee and Kari
Lee and Kari provided an additional update on the previous concerns regarding Avery's liver on September 24th:
Everything with Avery’s liver is good. It was actually the gallbladder. Dr. Pitcher said that with the MRI contrast it can make the gallbladder look sludgy. Good news ... no GI surgery, no further testing. Praise God!
What do we need from you? As Lee and Kari continue to prepare for Avery's upcoming surgery they will be altering their daily routine, along with the routine of their 4 children. In addition, the MRI and full-abdominal brace has created a larger then expected financial burden prior to the surgery and it is expected the hospital stay financial burden will be much larger then the goal we have set for them at $5000. Lee and Kari will both be taking off the week of Avery's surgery to remain at the University of Iowa Hospital and Clinics. Upon release from the hospital, Kari will be taking off 5 additional weeks to care for Avery as she begins the recovery process at home. If all goes smoothly, Avery will be returning to school after Thanksgiving break. This time frame will remain fluid until approval is given by her physician to return to work.
Thank you all for your support of Lee, Kari, Avery, Ethan, Tate and Mara. As their family, we are forever grateful for the endless love and compassion you have displayed to them.
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