Baby Tommy Parry, a four-week-old infant, has been diagnosed with a rare genetic disease that only 23 people in the world have. The diagnosis came after doctors noticed his cloudy eyes at birth. Initially thought to have cataracts, further tests revealed a larger-than-normal heart muscle, leading to his referral to Great Ormond Street Hospital at just two weeks old.
Parents Chantelle Doran, 30, and Tom Parry, 33, were informed on February 6, 2025, that their son has a rare mitochondrial gene with no known name. This genetic condition hinders his body’s ability to produce energy essential for heart function and brain activity. Shockingly, medical professionals have revealed that all 22 babies previously diagnosed with the same gene have tragically passed away before reaching two months of age.
In the face of this grim prognosis, Chantelle and Tom remain hopeful and are seeking a second opinion while raising awareness for potential future treatments. Despite medical advice suggesting nothing more can be done, the parents are determined to explore all avenues to help their son. Chantelle shared her disbelief at the situation, expressing that Baby Tommy continues to show signs of fighting and hope with his movements and eye openings.
The journey began with Chantelle’s smooth pregnancy, leading to Baby Tommy’s birth on January 8, 2025, at Watford General Hospital. Complications arose at birth, with Tommy experiencing breathing difficulties and the discovery of cloudy eyes. Extensive medical examinations detected an enlarged heart muscle and fluid build-up around the heart, prompting urgent intervention and care at Great Ormond Street Hospital.
The emotional rollercoaster for the family intensified when doctors disclosed the rare mitochondrial gene affecting Tommy’s energy production and the underdeveloped brain due to an additional gene. The rarity of this condition has resulted in a heartbreaking prognosis, with previous cases culminating in tragedy before reaching the two-month mark. Despite the challenges, the family remains steadfast in seeking further medical advice and support while advocating for increased awareness and research opportunities.
Despite being advised to consider turning off life support, Chantelle and Tom are exploring every possible avenue for Tommy’s well-being. While he relies on a ventilator to survive, with moments where he showed potential to breathe on his own, the family remains hopeful for a miracle. Their persistence in seeking a second opinion and raising awareness reflects their unwavering determination to fight for Baby Tommy’s life and pave the way for advancements in treatments for others facing similar conditions.
The heart-wrenching journey of Baby Tommy Parry and his family underscores the resilience and hope that can shine through even the darkest of circumstances. Their courage and determination to navigate this rare and devastating diagnosis exemplify the strength of a parent’s love and the unwavering spirit to explore every possibility for their child’s well-being. Despite the challenges ahead, the Parry family’s unwavering hope serves as a beacon of inspiration for others facing similar medical uncertainties and underscores the power of perseverance and advocacy in the face of adversity.