Just under one year ago, 15-month-old Abram Lovell Killpack was diagnosed with an extremely rare and deadly genetic blood disease, Wiskott-Aldrich syndrome. On March 21, 2018, at 3-months old, Abram’s parents, Devin and Marilee, received his diagnosis. Their fears about his symptoms were realized. Their world shattered. They were filled with dread as they tried to comprehend what Abram’s future would look like. In the days that followed Abram’s diagnosis, his family prayed, fasted and stayed close to each other as they faced their new reality.
Living with Wiskott-Aldrich syndrome (WAS) for nearly a year has strengthened the Killpack family’s faith. As devastated as they were by Abram’s diagnosis, they have seen the hand of God in the smallest details of their lives. Family, friends and miracles have surrounded them. Living with WAS means blood transfusions, expensive immunoglobulin treatments for a weakened immune system, weekly (sometimes daily) doctor visits, and diligent daily home care. Living with WAS means the Killpacks don’t attend church or public events as a family—Abram’s immune system is too fragile. On Sundays, Devin and Marilee take turns staying home with Abram, while the other parent attends church with the three other children (ages 3, 5, 7). The Killpack family cannot travel outside Utah and must stay within emergency hospital care access, per doctor's orders. However, now Abram must travel. He’s going to Seattle. It’s time.
A cure for Wiskott-Aldrich syndrome has been discovered. It includes 4-6 months of treatment consisting of chemotherapy, followed by a bone marrow transplant. It will take the Killpacks on a long journey—physically and emotionally. Seattle Children’s Hospital is home to Dr. Ochs, a pioneering researcher in WAS. Miraculously, Abram’s doctors in Utah (along with his insurance company) have cleared him to receive this needed treatment at Seattle Children’s Hospital.
Marilee and her son Abram will live in Seattle during Abram’s 6-month treatment. Devin will remain for most of this time in Provo, Utah, with the three older Killpack children. Halfway into Abram’s treatment, Devin will take one of his children (two siblings are matches) to Seattle where he/she will bravely donate his/her bone marrow to their little brother—which could essentially save Abram’s life.
Living apart for months will not be easy on anyone in the Killpack family. Devin and Marilee have been preparing spiritually, physically, emotionally and financially for Abram’s treatment and their family’s separation. They have saved money, and have found the best health insurance company for their situation.
Now we can help…
In setting up this fund (requested by many of you), we hope to give Devin and Marilee some peace of mind. By rallying together and raising money, we can help with their deductible, travel and childcare expenses, and potential future expenses for Abram, should any complications arise.
Please stand with Abram and his family. Help them carry this burden. However and whatever you can offer will be graciously received by this humble and loving family. God bless!