You may have heard about a little boy named Liam. His story has captured global attention. Liam is an 11-month-old from the UK, diagnosed with mitochondrial disease, and he has suffered severe brain damage that has kept him on a ventilator for months. His parents are advocating for him to receive experimental treatment in the U.S. — a treatment they believe could enhance his quality of life. Yet, the medical team at Great Ormond Street Hospital for Children, where Liam has been receiving care since October, argues that it would be best for him to be taken off the ventilator.
While millions are following this heartbreaking legal battle, it’s difficult to fully understand the parents’ position from afar. However, I find myself resonating deeply with their plight. I have walked a similar path. My son, like Liam, also has a rare mitochondrial disease and faced catastrophic brain damage at just 9 months old. I was met with the same disheartening prognosis: there was no treatment, no cure — just the recommendation to let him go.
Just like Liam’s parents, I chose to fight back against that narrative. As any parent of a seriously ill child would, I explored every option, reaching out for help and information. Surprisingly, my son did not deteriorate. With persistence and time, he stabilized, and through treatment, he gradually regained many lost abilities. His doctors now attribute this recovery to neuroplasticity—the incredible ability of the brain to adapt and heal.
It has been two years since my son’s brain injury. Initially, only three children were known to have his specific mitochondrial condition, all of whom sadly passed away in infancy. Since then, 15 more children with the same diagnosis have emerged, with 13 of them still alive and thriving, even into their teenage years.
Hope is not lost. Yes, these children may still face disabilities and ultimately have terminal conditions, but does that diminish their value? I have met countless children with life-limiting illnesses: those who are tube-fed, on ventilators, or face other severe challenges. Yet, I see the light in their eyes, the joy they express when watching their favorite movies, or the happiness they radiate when feeling the warmth of the sun.
My son and I have been blessed with precious time—time to bond and to live. Liam’s parents are compassionate individuals who are willing to fight for their son’s chance to live, however slim that chance may be. They aren’t searching for a miracle cure; they simply want him to experience life. I would do the same for my son, and I believe many would, too.
If you’re interested in exploring more about family planning, consider checking out resources on pregnancy and home insemination, like those at WHO. For further insights on how to navigate the journey of parenthood, I recommend visiting Make A Mom.
In summary, every child’s life is precious, and the fight for their right to live and experience joy is a battle worth undertaking. Liam’s story is a reminder of the resilience of hope and the lengths a parent will go for their child.