Sickle Cell Disease (HbSS) is the most severe form of sickle cell. It is a genetic blood disorder where red blood cells become hard and sickle-shaped instead of round. These cells can block blood flow, leading to pain crises, infections, and other serious complications.
Liam’s journey with sickle cell started at only 4 months old. What we thought were normal fevers (coming with teething) became hospital admissions, bloodwork, and words we never imagined would become part of our everyday language – splenic sequestration, low hemoglobin, transfusions, and crisis.
By 7 months old, after multiple episodes of splenic sequestration and hospital stays, Liam began monthly blood transfusions to help stabilize his body and reduce life-threatening complications with his organs. We learned quickly that sickle cell wasn’t something we only managed at appointments, it became part of everyday life. Watching for fevers. Checking his spleen. Learning his baseline. Understanding risks. Knowing when to monitor and when to move fast.
Right before his 3rd birthday, one of the hardest moments of our journey happened. Liam experienced a severe sickle cell crisis that left him unable to walk for an entire month. Watching your child want to move, play, and celebrate being little but instead hurting and unable to do what came naturally is something a parent never forgets. What should’ve been birthday excitement became recovery, patience, and celebrating progress one step at a time. As Liam got older, Sickle cell became more than a diagnosis, it affected school, routines, and childhood moments. There were missed school days, interrupted plans, hospital stays and trying to help him hold onto normal childhood experiences while navigating a disease that doesn’t pause.
Then in 2023, our world shifted again, and also brought on one of the scariest hospitalizations. Liam started having more noticeable pain crises, and we learned how much cold weather and changing seasons affected his body. What looked like a regular temperature change could trigger pain and exhaustion. And in January after just being admitted for slight fever and what started as another hospital visit for routine antibiotics and pain/fever management turned into our first PICU stay. Things changed quickly. One moment we were expecting one course, his left lung collapsed, and suddenly Liam needed BiPAP support to help him breathe. Watching everything escalate so fast was terrifying. Those moments remind you how serious sickle cell can be and how quickly things can change. We’ve also faced scares with heart enlargement, watching his body work overtime trying to heal itself, carry oxygen, recover from pain crises, and manage the effects of sickle cell. It’s hard to explain what it feels like to hear words like that connected to your child and still show up every day trying to stay steady.
He sometimes experiences yellowing of the eyes during sickle cell flares, a sign his body is under stress from increased breakdown of red blood cells. During a crisis, red blood cells can break down faster than usual, which leads to a buildup of a substance called bilirubin. This can cause the skin and eyes to take on a yellow tint, known as jaundice. Liam has shared that this has sometimes made him feel different or “set apart,” and he has even faced bullying because of it. We’ve worked through reminding him that this is not something strange or shameful; it’s actually his body’s way of signaling that it needs extra care. We use it as a reminder to slow down, stay hydrated, rest, and support his body closely during those times.
Through all of it, Liam keeps going. Full force. What amazes me most is that even in the hospital, he still finds ways to be a kid. Hospital rooms became places where Lego sets got built across tray tables. Coloring books got filled page by page. Play-Doh creations took shape. Music therapy brought smiles. Art therapy gave him an outlet. Therapy dogs brought comfort. Child Life has helped turn difficult days into moments of joy and normalcy.
We quickly learned how to advocate for Liam during crisis, making sure his pain, symptoms, and needs were never minimized, and that he received the care and attention he deserved. I also joined Facebook support groups and reached out to family and friends impacted by sickle cell disease, finding strength, knowledge, and community through shared experiences to better support Liam through his journey. We’re endlessly thankful for the organizations, volunteers, therapists, hospital staff, family, and friends who show up for these kids. Healing is more than medicine and they’ve helped prove that.
Liam has endured more than most children should ever have to endure. Pain. Transfusions. Hospital stays. Missed school. Breathing support. Fear. Recovery. And still he laughs. He creates. He dreams. He keeps showing up. Now we stand preparing for something we’ve prayed and hoped for: bone marrow transplant. His brother Josiah is a match and will be his donor, giving him a powerful opportunity for healing and a different future. Josiah was only 12 when he said he was ready to do whatever it took to help his baby brother – no hesitation, just “What do I need to do, Ma?” 🥹 My selfless oldest child. God is so good.🙌🏾
As Liam’s bone marrow transplant date approaches, our family’s journey continues to change. While we remain hopeful and trust in God’s plan, we also know this road will require many sacrifices and adjustments. Liam’s doctors have determined that he now requires supplemental oxygen after his oxygen levels repeatedly dropped into the 70% range with activity. He will remain on oxygen as his medical team works to keep him as healthy and stable as possible before transplant. In addition, his cardiology team has found that the arteries connected to his heart have become enlarged, placing added strain on his heart. He is being monitored closely by multiple specialists as they continue testing and preparing him for transplant. Liam’s bone marrow transplant is scheduled for September 17, 2026. Following the transplant, our family will be required to remain near the hospital for approximately 100 days so his medical team can monitor him closely. During that time, our lives will revolve around daily care, medications, clinic visits, lab work, and watching closely for any complications while his immune system rebuilds after the conditioning medications and chemotherapy.
As Liam’s appointments become more frequent and his care becomes more intensive, our family’s daily life and ability to work will change significantly. I will be Liam’s primary caregiver, remaining by his side around the clock before, during, and after transplant. My husband also had to adjust his work schedule as he helps care for Liam, supports me throughout the transplant process, and cares for Liam’s four siblings.
Every COTA donation no matter the size helps ease the financial burden this journey brings. Donations help with transplant-related expenses such as travel, lodging, meals outside the hospital, transportation, unexpected testing and lab work, childcare, and maintaining essential household bills. Support to COTA for Liam’s Hope allows our family to remain focused on Liam’s care and support physically and mentally through his transplant journey.Although we have prepared as much as possible, we know there may be unexpected challenges along the way. Transplant is a journey with many unknowns, but we continue to place our faith in God, trusting Him to carry Liam and our family, through each step.
Thank you for praying for Liam, encouraging our family, and supporting COTA for Liam’s Hope. Whether you give, share Liam’s story, or keep him in your prayers, your kindness reminds us that we are not walking this road alone. This transplant is life-changing for Liam in more ways than one. Not because his journey disappears, but because of what it represents: hope, possibility, healing, and the chance at a new future with fewer limits and more freedom to simply be a kid. As Liam’s journey continues, we will continue to share updates here.
This is Liam’s story.
A story of resilience.
A story of community.
A story of hope & healing . 💚
#LiamKBStrong
#HopeForLiamK #JourneyToHealing
#HopeInEveryStep
#HealingOneDayAtATime
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.