Yesterday, on Boxing Day, our family received the most incredible news—a gift beyond anything we could have imagined. After months of heartbreak, uncertainty, and the feeling of watching our precious Minnie slowly struggle for every breath, we finally learned that she
has a chance at the lifesaving surgery she desperately needs.
Minnie Moo was born with a very rare and severe form of congenital heart disease, Ebstein’s anomaly, along with multiple associated defects. Her condition is so complex that she is classified as a
single ventricle patient, meaning her options for treatment are extremely limited. Her daily life is heavily restricted—she is constantly breathless, her oxygen levels dangerously low, ranging from 75% to 82%, and she often appears cyanosed (purple) because her body is not getting the oxygen it needs. She requires
three PEG feeds per day, multiple medications, and regular nurse visits to monitor her heart failure.
For years, specialists here in the UK have been honest yet heartbreaking: Minnie is terminally unwell. She has been told repeatedly that she will never reach a state where her heart can be repaired. Even the leading UK cardiologists expressed that surgery would not be possible due to the
severity of her anomaly and her additional conditions.
But we refused to accept that fate.
We fought tirelessly to explore every possible option, gathering medical data, seeking second and third opinions, and pursuing every avenue for a last chance. And finally, hope arrived from across the ocean.
Dr. Da Silva, the pioneering surgeon who invented the intricate ‘Cone Procedure’—the very operation Minnie urgently requires—has agreed to take on her case.
This news is monumental. Dr. Da Silva’s expertise offers Minnie a
final beacon of hope, a chance for a better quality of life, and the opportunity to survive where other options have failed. For the first time, we feel that Minnie’s struggle might lead to a real possibility of repair and a future she otherwise would never have had.
Of course, receiving this surgery in America comes with significant financial challenges. The cost of Minnie’s care, including a medical flight to the U.S., the surgery itself, and 11 days as an inpatient
, amounts to £140,000. Additional hospital days are billed at £6,000 per day, meaning every extra day Minnie requires intensive care will add further expense.
We cannot do this alone. Minnie has fought so very hard to reach this point, and as her family, we have fought just as tirelessly alongside her. Now we are asking for help to make this life-saving opportunity a reality. Every donation, no matter the amount, will directly contribute to giving Minnie the best chance at life.
We understand that not everyone can donate financially, but sharing this campaign is just as powerful. Each share spreads awareness, raises hope, and connects us to people who may be able to help Minnie in ways we cannot imagine.
This journey has tested us in ways we never anticipated. Watching Minnie struggle with every breath, worrying over each oxygen reading, and navigating the complex medical landscape has been exhausting and heartbreaking. But the thought of
giving up is not an option. Minnie’s spirit, resilience, and determination have inspired us daily. She is a fighter in every sense, and she deserves every possible opportunity to survive and thrive.
With your support, we can help cover the costs necessary to get Minnie to the skilled hands of Dr. Da Silva, ensure her care in the hospital, and provide her with the
lifesaving surgery that she so urgently needs. This is more than a medical procedure—it is a chance to extend the precious time we have with her and to give her a life filled with love, comfort, and hope.
We thank each and every person from the bottom of our hearts for taking the time to read Minnie’s story, for sharing it, and for contributing in any way you can. Your generosity, prayers, and love will give Minnie a fighting chance—a chance that, until now, seemed impossible.
Let us rally together as a community to give Minnie the gift of life. Every donation, every share, every prayer matters. Surgery is not just an option—it is her only chance
, and we refuse to let this opportunity pass.
Thank you for joining us in this fight, for helping us support Minnie, and for giving this precious little girl hope when she needs it most. 💖
Vincent: The Little Boy Who Shines Despite Angelman Syndrome.2080
Vincent, lovingly known as Vinny, is just two years old—but his life has already been shaped by extraordinary challenges and remarkable resilience. Born with Angelman Syndrome (AS), a rare neuro-genetic disorder, and Global Developmental Delay (GDD), Vinny’s journey is one of courage, determination, and unwavering joy. Though nonverbal and not yet able to walk, Vincent’s spirit shines brightly, illuminating the lives of everyone who knows him.
Angelman Syndrome is caused by a loss of function in the UBE3A gene, leading to severe developmental delays, difficulties with movement and balance, and other medical challenges. Genetic testing is required for a diagnosis, and in Vincent’s case, he has the deletion type—the most common form of AS. This diagnosis brings with it a lifetime of physical and cognitive challenges, requiring ongoing care, therapy, and support. Vinny also suffers from seizures and ataxia, a severe balance disorder that makes walking and coordination particularly difficult. Yet despite these hurdles, he approaches life with joy, laughter, and an unbreakable spirit.
For Vincent’s family, every day is a mix of triumphs, challenges, and profound love. Watching Vinny work tirelessly in therapy, striving to gain strength, coordination, and independence, is both inspiring and heart-wrenching. His determination is evident in every small milestone he achieves, whether it’s sitting up on his own, reaching for a toy, or engaging with those around him. Though his progress may be gradual, each step represents a monumental victory over a condition that affects every part of his development.
Vincent’s personality is as vibrant as it is heartwarming. He has a contagious laugh that can brighten the darkest days, and his smiles have the power to light up an entire room. He is friendly, affectionate, and loves to interact with both people and animals—especially his beloved doggies. Water play is one of his favorite activities, bringing him immense joy and giving him moments of freedom and delight. Through his laughter and engagement with the world, Vincent reminds everyone around him that joy and courage can coexist with profound challenges.
While the medical complexities of Angelman Syndrome are significant, Vincent’s story is also a story of hope. Organizations such as the Angelman Syndrome Foundation are tirelessly working to better understand the condition and pursue treatments, with the ultimate goal of finding a cure. Advances in research and therapy provide hope not just for Vincent, but for all children living with AS, offering the promise of improved quality of life and new possibilities for the future.
Vincent’s journey underscores the importance of awareness, support, and advocacy for rare disorders. Families of children with Angelman Syndrome face lifelong responsibilities, from managing seizures and developmental delays to navigating therapies and medical care. But alongside the challenges are countless moments of joy, love, and inspiration. Vincent’s resilience, curiosity, and boundless spirit serve as a daily reminder that even in the face of significant obstacles, children can thrive emotionally, socially, and relationally.
For his family, Vincent is not defined by his diagnosis or the limitations it imposes. He is defined by his laughter, his enthusiasm for life, and the way he connects with the world. Every hug, every smile, every giggle is a testament to the joy he brings to those around him. Though he will require lifelong care and support, Vincent’s presence is a daily celebration of the human spirit, showing that love, determination, and perseverance can flourish even under the weight of serious medical challenges.
Vincent’s story also serves as a call to action. Supporting research, contributing to organizations like the Angelman Syndrome Foundation, and advocating for awareness are ways that the community can help children like him thrive. His life is a powerful reminder that rare disorders may be challenging, but they do not diminish the joy, love, or potential of a child.
At just two years old, Vincent has already taught those around him profound lessons about courage, joy, and resilience. He may not yet walk or speak, but he communicates in ways far more powerful—through his laughter, his smiles, and the love he shares freely. Every moment with Vincent is a gift, every milestone a triumph, and every day a reminder that even the smallest hearts can carry the greatest courage.
Vincent is more than a child living with Angelman Syndrome. He is a beacon of hope, a source of joy, and a living testament to the power of love, perseverance, and the human spirit. His story reminds us that, no matter the challenges we face, courage, laughter, and resilience can light the way for a brighter tomorrow.
