Mom Searches for Bone Marrow Match for Daughter, 5, After Son, 2, Suffered the Same Rare Disease (Exclusive)

**Virginia Family’s Battle with Rare Genetic Disorder Sparks Community Action**

Kiya and Justin Thompson, a couple from Virginia, have found themselves at the centre of a tragic yet inspiring tale as they navigate the challenges posed by Chediak-Higashi syndrome, a rare genetic disorder that affects the immune system. Their two children, five-year-old Noelle and her younger brother, Lucca, aged two, have both been diagnosed with this serious condition, which poses numerous health risks, including recurrent infections, bleeding complications, and potential neurological issues.

The family’s journey took a distressing turn when Kiya began to notice that Noelle consistently fell ill more than a dozen times a year, exhibiting concerning symptoms such as painful oral ulcers and problems with vision. Doctors initially reassured Kiya, attributing these health issues to the child’s immune system still developing. However, as a trained ICU trauma nurse, Kiya’s instinct led her to seek further investigation, which ultimately revealed Chediak-Higashi syndrome in her children after genetic testing.

This diagnosis not only confirmed Kiya’s fears about Noelle’s health but also revealed that her son, Lucca, had inherited the same disorder. While Noelle had multiple bouts of illness, Lucca exhibited a different pattern; he would generally remain well until he fell seriously ill. After a particularly severe episode, Lucca was hospitalised and treated for a potentially life-threatening complication associated with the syndrome.

As both children require urgent bone marrow transplants to correct their defective immune systems, the need for matching donors became critical. The family faced heartbreak when Kiya and Justin’s attempts to find a compatible match for Noelle proved unsuccessful. Despite scouring the global bone marrow registry—which boasts over 42 million potential donors—not a single match was found.

In desperation to help their daughter, the Thompsons initially considered Kiya’s husband, Justin, as a half-matched donor. However, additional medical tests revealed worrying abnormalities in his bloodwork after he was referred to a specialist, further complicating their circumstances and leaving the family without a clear path forward.

In a moment of vulnerability, Kiya turned to social media to spread awareness about Noelle’s plight and the urgent need for stem cell donors. Overcoming her initial reluctance to share the family’s personal struggles, she recorded a heartfelt video detailing her children’s health challenges and encouraging others to join the bone marrow registry. The response was overwhelming; her video garnered widespread attention and led nearly 700 people to register as potential donors.

Kiya remarked on the wave of hope that followed the community’s response, “For the first time in months, I felt something I had almost stopped allowing myself to feel—hope. There are good people out there who want to help; they just may not know that their donation could save a life.”

While progress has been made, with Lucca receiving a successful transplant last November from a 25-year-old match in Spain, Noelle’s situation remains precarious. The family continues to seek a donor for her and remains hopeful that the right match will eventually be located. Kiya believes that spreading awareness not only serves her child’s needs but also highlights the critical issues surrounding stem cell donation and the ongoing challenges faced by families in similar situations.

Noelle, despite her health challenges, remains a spirited child with a love for performing. Her enthusiasm and vivacity shine through, especially when she sings and dances at home, bringing joy to her family amidst the uncertainty of their circumstances. Kiya hopes that, through sharing her family’s journey, they can inspire others to consider registering to become bone marrow donors, helping to bridge the gap for families fighting similar battles.

As the Thompson family’s story unfolds, it serves as a poignant reminder of the resilience of the human spirit and the profound impact that community support can have in times of crisis. With Noelle’s health at stake, Kiya is determined to shine a light on their experience, providing a beacon of hope for not only her daughter but also for any child in need of a life-saving match.