COTA for Lindsay Girls

Our Story

We are the Lindsay family. Our beautiful girls, Sawyer and Harper, need your help. We are facing a new challenge as Sawyer and Harper have both been diagnosed with DOCK8 immune deficiency disease. Dock8 is a recessive gene mutation that causes the immune system to not function properly. We have been dealing with the symptoms of DOCK8 for the entirety of their life, but we have always just been told that “kids get sick”, as no life-threatening illnesses had occurred. However, we recently received a diagnosis that explains both of their symptoms and recurrent illnesses. Each child with DOCK8 presents the disease differently. Both girls have dealt with life threatening food allergies from infancy, along with terrible eczema, and more frequent illnesses than a typical child. Outside of those issues, they each have a unique set of recurrent infections that differ from one another.

Sawyer is a wonderful, sweet girl, who has dealt with medical appointments and surgeries since she was three months old. She was born with amniotic banding that caused significant craniofacial anomalies, along with anomalies of her right hand/arm. To this date, she has had twelve surgeries to repair/improve her day-to-day function, mobility, and strength. She never complains, she just trudges through each surgery and specialist appointment with joy. She has more strength in her that few people have. Aside from these congenital issues, her DOCK8 has caused her to have recurrent staph skin infections, strep, impetigo, ear infections, and over fifteen anaphylactic food/drug allergies. She has required injection of epinephrine approximately ten times in her six years of life.

Harper is somewhat opposite of her sister, both medically and personality wise. She is the wild child and is absolutely fearless. Her infectious history has had a different trend over the years. She has asthma, recurrent urinary tract infections, and recurrent pneumonia. Most recently, she spent over two weeks as an inpatient, fighting a rare kind of pneumonia, pneumocystis, that only those immunocompromised are affected by. She spent four days in the pediatric ICU Two of those days she was on a ventilator so they could perform testing to see what kind of infection was causing her lungs to be so ill, and so her lungs could have an opportunity to rest. Even before this recent admission, she has had less severe pneumonia on three other occasions within three years. We always thought of Harper as our NON medically complex child; however, we were so wrong.

The main concern with DOCK8 is that, as the girls grow, their immune system becomes weaker and weaker. These infections become more frequent and more serious as the immune system is unable to detect what it should. This can cause irreversible damage to the body such as stroke, vasculitis, damage to major organs, as well as infections they simply cannot fight. Another concern with DOCK8 is that the immune system cannot detect cancer like it should and malignancies are almost inevitable. Thankfully, there is a treatment for DOCK8. The only known treatment currently is a bone marrow transplant. While prognosis without the transplant is grim, a successful bone marrow transplant is shown to change lives for those with DOCK8. We now face the most difficult medical treatment/procedure of their lives. They will need to receive chemotherapy to kill their bone marrow cells before receiving donor cells for transplant. After receiving the donor cells, it takes time for those cells to attach to the bone. The process can take anywhere from 30-120 days as a hospital inpatient.

While we thought we had great insurance with my hospital policy through work, our insurance company is not contracted with our transplant team at Phoenix Children’s Hospital. This means we will be accruing large unknown amounts of medical bills that we could have never predicted prior to this diagnosis. Along with medical bills, I will need to be off work for an extended period for each transplant. Unfortunately, the team has decided that it is not ideal for them to have their transplants at the same time, due to the amount of care required even after discharge. We hate to even to be asking for assistance from anyone as we have always been prideful taking care of our girls’ medical bills on our own. However, we are realizing that sometimes we must be vulnerable and ask for help from those around us in times of great need.

We have teamed up with COTA as we feel they have our girls’ best interest in mind. COTA is a nonprofit organization and has been fundraising specifically for transplant children for many years. Our volunteer ambassador is Dawn Stineman. We are so thankful to have her on our side, helping us raise funds for COTA in honor of the Lindsay Girls to reach our goals and get these beautiful little ladies the care they need to live a long healthy life.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.