COTA for Alek Strong

Our Story

This past July, Alek experienced a seizure leading to cardiac arrest. As a result, he stayed in the ICU for over one month. Alek was initially airlifted from Bryan, Ohio to Toledo, Ohio where he stayed in the pediatric ICU for three days until his kidneys began to shut down.  This required Alek to be airlifted to the University of Michigan where he could receive continuous renal replacement therapy (CRRT). After his initial discharge from U of M, Alek was rushed back to Toledo ProMedica and ultimately airlifted a second time to U of M for an additional stay – as something was still causing Alek to remain sick.  He was discharged again and scheduled to see a doctor in Defiance, Ohio a few days later.  During the appointment, Alek still felt very ill. The doctor wanted further answers, so Alek was readmitted to the ICU and received consultations from GI and Endocrinology. At this time, the family learned that Alek was suffering from adrenal insufficiency.  He immediately started a daily steroid regimen to help his body maintain an appropriate level of cortisol.  

After further blood work, Alek was diagnosed with Adrenoleukodystrophy (ALD), a rare genetic condition affecting the composition and function of the brain. His mother, Heidi and father, John quickly started doing their research and found a physician who specializes in this disease at the University of Minnesota Health Masonic Children’s Hospital.  Dr. Gupta caringly took Alek on as a patient and scheduled him for his first round of appointments, tests, and brain MRI in October.  While everything looked good initially, Dr. Gupta explained that a Bone Marrow Transplant (BMT) would be required to stop the progression of the disease if it continued to worsen.   

Alek returned to Minnesota in January for a follow up appointment and received another brain MRI. The results revealed that the disease had progressed, and showed several lesions on his brain. During this appointment, it was decided that Alek was a candidate for a BMT and that the transplant would need to occur quickly to get ahead of the disease and hopefully prevent additional progression.

Alek was admitted to the hospital on February 3rd to begin preparations for his BMT, which is scheduled for February 13th. This included both immunotherapy and chemotherapy. 

The family has partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses, including all of the life-saving expenses that result from the diagnosis that requires a patient to be transplanted.  Please consider donating to COTA in honor of Alek. 

With a BMT, Alek will be required to stay in Minnesota for a minimum of 100 days post-transplant.  This will require Heidi and John to miss a significant amount of work as well as travel to and from Minnesota as needed.  Alek has two younger brothers, Coehen and Sylas, who will also be traveling to see their brother and be together as a family as much as possible. 

We know this journey will be anything but easy, but we already feel the love and support from those around us.  We might not always understand, but we do know that God has a plan and we have to trust in Him!  We will use this page to keep everyone updated on Alek’s journey, and we welcome you to follow along! 
Be strong and courageous! 
Joshua 1:9
Deuteronomy 31:6  
-The Bell Family

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.