A YOUNG mum whose baby girl saved her life, is now facing the heartbreaking prospect of losing her to a rare one-in-a-million condition.
Little Willow Rae Porter was born with inclusive-cell (I-cell) disease, which severely affects her breathing, heart, digestion, joints and could claim her life by the age of three.
Katie Hanson calls her baby daughter Willow her “saviour” after pregnancy scans revealed she had cervical cancer
Despite facing a diagnosis of cervical cancer during her pregnancy, 23-year-old Katie Hanson from Seattle, Washington, opted to carry her baby to full term rather than undergo immediate treatment as advised by doctors.
Only after giving birth did she have a successful operation to remove the cancerous tumor, making her now cancer-free. Katie is grateful to her daughter, Willow, and cherishes every moment with her, acknowledging that if she hadn’t been pregnant, she might not have discovered the cancer.
But soon after she was born, at three months old, Willow was diagnosed with an ultra-rare illness that means it’s unlikely she’ll live beyond the age of three
Despite facing the suggestion to terminate her pregnancy, Katie chose to prioritize her daughter’s life over her own. After giving birth, she underwent surgery to remove three inches of her cervix. Despite the challenges, Katie expressed that hearing her daughter’s diagnosis was “crushing,” turning their world upside down as they prepared for a life-limiting situation.
In addition to these challenges, Willow contends with heart failure, respiratory failure, kidney problems, as well as neurological and developmental issues. Her fragility is such that even a common cold could be life-threatening, given her compromised immune system.
Little Willow, who is nearly two, was diagnosed with I-cell disease, an incurable and life-limiting illnessCredit: Caters News Agency
A common cold could land Willow in the hospital with a potential need for a life-support machine, according to her mom, Katie. Despite the challenges of I-cell disease, where many children remain mute, Willow has proudly learned to say “mumma” and “yeah” when excited.
The adorable toddler suffers severe problems with her breathing, heart, digestion and jointsCredit: Caters News Agency
In just two days, a test revealed that Willow, the toddler, was suffering from I-cell disease, also known as mucolipidosis II—a process that can take up to six months.
Constantly at risk of pneumonia, Willow has already battled the illness eight times, in addition to facing breathing and digestion problems. She also struggles with a growth deficiency, weighing just 1st 3lbs and measuring 27 inches tall, the average size of a six-month-old baby.
Willow’s condition is so fragile even a common cold could kill her and she’s faced pneumonia eight times already in her short life
A ONE-IN-A-MILLION INCURABLE DISEASE
I-cell disease, also known as mucolipidosis II, is a rare genetic disorder characterized by coarse facial features, skeletal abnormalities, and learning difficulties. Symptoms often manifest in babies, with signs such as growth delays, abnormalities of the skull, curvature of the spine, a short neck, dislocation of the hip at birth, and swelling or enlargement of the top of the spine.
Despite the challenges, Katie marvels at her daughter’s courage and determination. She noted, “There are only two genetic specialists for I-cell, and there is no direct federal funding for I-cell, so funding relies on families who have been affected, like the Yash Gandhi Foundation.”
Doctors advised that Katie have an abortion so she could start cancer treatment but she refused, and waited to have a three-inch tumour removed until after giving birth