So many of you have e-mailed me and asked about Averi, my sweet little granddaughter. I thought I would just share her story with you - she is truly a little miracle. Much of what I will share was shared with me by LeAnn, Averi's other amazing grandmother! You can find her wonderful blog here. She was very diligent and kept a journal throughout Averi's journey.
Today, our precious granddaughter is 8 years old, and we thank Heavenly Father everyday for her. Averi had a rare bone marrow disease called osteopetrosis, which was diagnosed when she was 4 months old. In this disease there is no joint formation and the bones become very dense, taking up the space allowed normally for bone marrow. If a child lives through it, it can cause blindness and deafness. At first they felt they had caught it early enough to prevent those complications, but unfortunately, the small hole that the optic nerve passes through, became thick and pinched the optic nerve, causing Averi to be blind.
Averi’s only hope was a bone marrow transplant. And, to make a long story short, her brother Christian, just happened to be a perfect match, which was the first miracle, as most siblings are not matches. Before she could have the bone marrow transplant, she first had to have very aggressive chemotherapy, to kill the bone marrow. During this time, there were many complications, which landed her in the PICU. She was in the Primary Children Hospital in Salt Lake City, Utah for 6 months; most of those months were spent in the Intensive Care Unit. She had a tracheotomy and was on the highest level of ventilator called an oscillator for most of the time. Her lungs were compromised and her kidney's failed. At one point, she was on 24 hour Kidney Dialysis. She also suffered with Congestive Heart Failure. The staff told us that she was one of the sickest children that they had ever worked with. At one time she had over 17 different medications going into her IV's. The bone marrow transplant failed the first time and had to be administered a second time, which was very devistating.
Averi's father was trying to finish Pharmacy school at Idaho State University, so he could only spend a limited amount of time with Averi’s mother and Averi. This of course, broke his heart. Meanwhile they had two other children; Christian, age 4 and Taylor Jo, age 2. LeAnn and I took turns caring for the children and staying with Amber at the Ronald McDonald House in Salt Lake, City. Amber, being the dedicated mom that she is, only came home one time in the six months. I have often wondered how she endured such a trial - she never complained.
During this difficult time, Averi would have very few good days; most of the time, her life was on the edge. There were several times when we were told that it wasn't looking good and we would call James to come to the hospital. He would come and then she would improve a little bit and he would return home and back to school. Just as a side note, James graduated from pharmacy school, and received his doctorate degree in pharmacy with honors.
She was given many blessings, many prayers were offered in Averi's behalf, not only our church members, but also by many other wonderful friends and family not of our faith. Many prayer circles were also organized on her behalf around the world. We fasted and prayed and hoped for a miracle. On Mar. 20th 2003, James and Amber were told by the physicians that they needed to think about taking her off the ventilator because they felt that there was nothing more they could do for her. They thought that she may have brain stem damage, and possible damage to the thalamus gland. They wanted to decrease her Nitric O2 so they could take her down for an MRI. In decreasing this they told them she might go into a cardiac arrest and they needed to know how progressive they wanted them to be. Everyone came to the hospital to be with them, pray with them and support their decision. We discussed it as a family, and felt that they shouldn’t do the MRI test at that time. We discussed it with the physicians and they agreed to wait. The physicians, after discussing the medications with James and Amber, decided to decrease some of her sedation. This was prompted by James, who had been closely following the medications that she was on. Being a senior in Pharmacy school he was able to keep up with the most current information on all of Averi's medications.
She received a blessing on March 23rd. James told Heavenly Father that they were willing to let her go home to be with Him if this was His will for her. We felt a peace and comfort fill the room at that moment - LeAnn had said all along that she knew in her heart that Averi would be just fine! We attended a church service that day at the hospital and it was a very sweet experiences, the spirit was so strong in that meeting. We later received word . . . that very same day, that she was 100% grafted, wish meant that the bone marrow transplant had worked! This was a great blessing!
From that day on , Averi continued to improve. She was very active once the sedation was decreased, and the physicians now felt that she didn't have brain damage. They finally had an opportunity to do an MRI , and it was inconclusive for any brain problems. She continued on dialysis with a hope that it would improve, but the doctors told Amber that she would more than likely never come off of the dialysis, and that she would eventually have to have a kidney transplant. Her lungs were doing poorly; but the physicians felt the lungs would improve.
By the end of the month her lung and respiratory function had improved enough that she was taken off the Oscillator ventilator and put back on a conventional ventilator. And not long after that, she was taken completely off of the dialysis machines.
We knew that she had improved through blessings, faith and the prayers of so many people who loved her, and some who did not even know her, but loved her. She also was very blessed to have wonderful medical care. She is indeed our miracle baby.
Averi is doing very well now. She does not need any medications. She has some developmental struggles to overcome; but we feel confident that she will continue to thrive and grow into a beautiful young woman. She has a very small amount of vision, which allows her to see some obstacles in front of her, depending on the light. If she is in familiar surroundings, she can walk around without assistance, even run! She goes to regular school and has a wonderful aide who loves her, helps her, encourages her, and teaches her how to function as a blind child. Her parents and siblings are also amazing - and her biggest fans!
Averi is a very bright little girl, with so much to offer the world. In this circumstance faith preceded the miracle.
Averi has played the piano by ear since she was 31/2 years old. She loves to entertain, and especially loves it when you clap and cheer for her! She is learning Braille, and is very good at it. Yesterday, she came home from school and we were so excited because she had passed her spelling test, by typing it out in braille, with flying colors! She sat down at her braille type writer and typed me two long letters before I had to leave! I was so excited - this is the first time I have had something that Averi wrote to hang on my fridge!!