Meet Baby Jack, a truly incredible little fighter facing an unimaginable challenge. Jack, just one year old, has a genetic condition so rare it doesn’t even have a name. He’s the only baby in the UK with this specific mutation and one of just 16 cases worldwide. The journey for Jack and his family has been nothing short of heart-wrenching and inspiring.
Amanda Thomas, Jack’s mum, shared when she first realised something was wrong. Jack struggled with eye contact and then experienced a terrifying seizure. It led to the discovery that Jack has a unique mutation of the PPFIBP1 gene, inherited from both parents. While his three siblings remain unaffected, Jack now battles a host of symptoms including severe seizures and blindness.
Sadly, there is currently no treatment or cure, and the family have been told Jack might not have long to live. Despite this, Amanda and her husband Nicholas are determined to cherish every moment they have with him. While juggling immense challenges, their love for Jack shines through every step of the way.
Life is undoubtedly a whirlwind for the Thomas family. With frequent hospital visits, medication schedules, and constant supervision, Amanda has had to leave her job to care for Jack full-time. Yet, their strength and love remain unwavered. Jack’s brothers and sister adore him, showing profound empathy beyond their years as they help identify subtle seizures.
The family hopes to raise £20,000 to aid Jack’s therapy needs and larger equipment as he grows. They’ve already received over £1,210 in donations and support. Every single contribution helps them provide the best quality of life for Jack and create cherished memories together.
Amanda’s quest doesn’t stop at caring for Jack; she’s actively raising awareness about his condition in hopes of connecting with others who might be facing similar battles. The family celebrates every little milestone and continues to make the most of their time together.
Let’s rally around Jack and his family. Their story is a poignant reminder of the resilience of love and the power of hope. Every moment spent with Jack is a treasured gift, filled with joy and pride.