Our granddaughter Averi was diagnosed with Infantile Osteopetrosis at the age of 15 weeks. This is Averi’s miraculous story and our journey with her.
The story for us began as I was enjoying a Relief Society Christmas party in my home. I received a call from my son telling us that Averi their 15 week old baby had been admitted to the hospital. The next day we were told that Averi had either leukemia or a rare disease called Osteopetrosis; neither option was good. We were all devastated. Over the next few days, Averi was tested and the final diagnosis was Infantile Osteopetrosis. Osteopetrosis is a congenital disorder in which bones are overly dense. It is caused by a recessive gene from both parents. We now knew that she had been in severe pain since birth. She had cried a lot; but it was thought that she just had severe colic. Some complications from this disease are fractures, frequent infections, blindness and deafness. This disease can be severe, often resulting in death during the first decade of life.
My son, James and our daughter-in-law, Amber, were told to take her to Primary Children’s Hospital in Salt Lake City for further testing. She was admitted into Primary on Christmas Day. My husband and I drove from our home in Washington to Utah to be with our family. James and Amber told us later that they cried all night the first night there; they realized that they might lose their precious little one. It hurt them both to think that she had been in severe pain since birth.
The only possible cure for this disease was a bone marrow transplant. We immediately called all of our children and extended families and asked if they would fast and pray with us. Both James and our ward congregations fasted with us. Averi was given a priesthood blessing by her father and two grandfathers. My son petitioned the Lord to heal her if that was His will, that the physicians would be inspired to know how to care for her and that a bone marrow match would be found quickly. Only 30 % of patients who need a bone marrow transplant have a matching donor in their families. The remaining 70 % must hope that a compatible stranger can be found using the national registry. Only 25 % of siblings will be a match.
The first miracle was that her 3 1/2 year old brother Christian was a 100% bone marrow match. In fact he had a very rich stem cell count which was a miracle and answer to our prayers and priesthood blessing. To us this was a profound blessing and Christian was diffidently part of Heavenly Father’s plan for Averi. This one miracle helped us be optimistic about her future.
Before the bone marrow transplant could be done; Averi had to go through high doses of chemotherapy. During the chemotherapy she had complications and was transferred into the Primary Intensive Care Unit where she was intubated and placed on a respirator. After the chemotherapy she received the bone marrow transplant. The first one failed and it was repeated again. All of this was a process over many weeks. Over the next 5 1/2 months her condition in the PICU was critical. She was one of the sickest long term babies that the PICU had ever had. It was a long roller coaster ride for us all. One day she would be really bad and then the next day a little better. James at the time was attending his last year of pharmacy school and he needed to finish. Amber’s mother Barbara and I traded places every two weeks. I would stay with Amber in the Ronald McDonald house for two weeks and then trade with her and go to Idaho to care for their other two children, Christian and Taylor Jo. Four times during those months, we called James to come because her condition had worsened. Averi continued to have complications such as congestive heart failure, kidney shutdown, which required kidney dialysis; lung problems which required a tracheotomy and placement on the oscillator, a high level respirator. She had at one time 17 different medications going through her IV’s. She eventually had an abdominal feeding tube inserted. Prayer, fasting and priesthood blessings were given during the crisis moments and she would make slight improvements that would provide hope. We know that thousands of people prayed for her. Many were not of our faith; her name was added to their prayers and prayer circles. Averi’s name was on countless prayer rolls in our temples.
After about two months in the PICU; we were told that Averi was blind. This was a complication that we knew could happen. Considering all she had gone through this seemed minor at the time. Then one day one of her physicians came and gave her a physical exam and determined that Averi had brain stem damage. She felt that we should stop the respirator and just let her go. I remember kneeling on a bathroom floor in prayer and crying out in agony. Averi had suffered so much was this His will? We all cried until we couldn’t cry anymore. What was Heavenly Father’s will for her? We held another family fast and prayed fervently. James gave her a beautiful blessing and told Heavenly Father that if she were to die they were prepared to accept his will. This was such a poignant moment. A short time later, James felt inspired to encourage the medical team to wean her off some of her medications. She had been heavily sedated while on the oscillator. As they did this she started to move all over and it was obvious that she did not have brain stem damage. She started to improve in every area and within a few weeks she was taken off the kidney dialysis and respirator. Averi finally came home in June.
We found over the next several weeks that Averi could see light and the shadow of objects. At age 3 1/2 she started to play the piano by ear which has brought great joy to us all. She is learning braille and how to live in a blind world. She is a very happy child and is learning so many things. She is amazing to us all. We are so blessed to have her doing so well.
Averi was so excited to be Baptized and Confirmed into The Church of Jesus Christ of Latter Day Saints this year.
In 2008, Averi’s story was a Mystery Diagnosis episode entitled, “The Baby That Wouldn’t Stop Crying”.
Through this ordeal we learned the following lessons: We know that Heavenly Father hears and answers prayers and that priesthood blessings can heal. We know that guardian angels were by Averi’s side during this ordeal. The spirit brought comfort and peace to our souls during each crisis. We know that the Savior walked with us during this trial. We are so grateful for the Gospel of Jesus Christ and the knowledge that He can heal us. I can picture in my mind the day that Averi will walk forth into the arms of our Savior, Jesus Christ and He will heal her. Averi will see.
Thank you for sharing your beautiful story. I was touched at how both Grandmas stepped in to really help out at a tough time — thanks for being a great example of family!
I just saw the episode about Averi on Mystery Diagnosis and missed the ending. I googled it and found your blog. Thank you for sharing your story, it was beautifully written and brought me to tears. I am so happy to hear Averi and her family are doing well and the picture shows what a beautiful girl she is! Thank goodness you didn’t listen to the doctor who misdiagnosed Averi with severe brain damage. God did see you through! It certainly has given me a wake up call when we all can get caught up in the trials of day to day life. It takes a story like this to make those trials just that trivial Your daughter, son in law, Averi, Averi’s two older siblings and all of your family have been through been a horrible ordeal but your faith saw you through and by sharing your story you give others hope, knowledge and the importance of bone marrow donation! Best of luck!
Thank You Jesus! God really did a miricle and thank you for sharing. that is faith that you guys showed!prais the lord.
I am a mother of a beautiful little girl who I lost at the age of 3 1/2 in 2001. She was dx with Osteopetrosis in 1999. Her disease process took a much different course than Averi’s. I saw your story on MD and I knew I just had to reach out.
Thank you so much for your comment. I am very sad for your lost. I can’t imagine the pain on that one. We nearly lost our Averi several times over a 5 month period of time. Averi is now 13 years old and is doing well physically. She is blind with a touch of peripheral vision. She is Autistic and is a Savant. She is really good with dates, numbers and music. Her communication skills are improving. We are very grateful for her and have learned many things through her disabilities. It has been a long road for her parents. I will send you their contact information and I know my daughter in law would love to communicate with you. Sending loving thoughts your way! LeAnn