Hull Family Faces Battle as Toddler Diagnosed with Rare Cancer

A two-year-old boy from Hull has been diagnosed with a rare and aggressive form of cancer, significantly impacting his young life and that of his family. Charlie Shilleto’s parents, Louisa and Lee, are now navigating a challenging journey after the discovery of a large lump under his arm, which led to urgent medical intervention.

The alarming moment occurred in early December 2023 when Louisa noticed a prominent lump while bathing Charlie. “I shouted my husband up and he said, ‘that doesn’t look right,’” she recounted. Upon further inspection, they found a lump the size of a golf ball. The family had been busy preparing for the festive season, and until that moment, Charlie showed no signs of illness.

Following the discovery, the family rushed to Hull Royal Infirmary, where medical professionals quickly arranged for Charlie to be transferred to Leeds General Infirmary (LGI). After a series of tests, including a biopsy under general anaesthetic, the family faced an agonising ten-day wait for results. Just one week before Christmas, they received the devastating news: Charlie has stage four metastatic embryonal rhabdomyosarcoma, a rare and aggressive soft tissue cancer.

Louisa described the shocking turn of events: “You’d never have known there was something so sinister under the surface.” A large tumour was found on the left side of Charlie’s chest, which had spread to his lymph nodes in the armpit and neck. The cancer caused a collapse in his left lung, prompting the medical team to initiate treatment immediately, even before an official diagnosis was made.

Charlie has since completed his first round of chemotherapy but faces an arduous two-year treatment plan. His parents, who previously worked full-time, now find themselves juggling their lives around Charlie’s care. “What we have seen from the first round of chemo is Charlie gets really ill,” Louisa noted. “He didn’t want to eat or get out of bed.”

The Shilleto family had hoped to celebrate Christmas together, and they managed to return home for Christmas Eve. However, their joy was short-lived. They were back in Hull Royal Infirmary the day after Boxing Day when Charlie developed a high fever. “You look at what he is going through with his treatment and you think, why am I doing this to my little boy? It really is brutal,” Louisa expressed.

Louisa remains uncertain about Charlie’s future, as the nature of rhabdomyosarcoma carries a high rate of relapse. “You hope that after six months they say, ‘we’ve treated it, there are no signs of the disease,’ but the problem with rhabdomyosarcoma is that it’s got a really high relapse rate.” Despite the challenges, she remains hopeful, stating, “Charlie’s age is on his side; we’ll see how he is responding as the treatment progresses.”

The impact of Charlie’s illness extends beyond him. His seven-year-old brother, Oliver, is struggling with the situation, and the family is working with his school to ensure he receives the necessary support. Louisa’s sister-in-law, Alysha Curtis, has initiated a GoFundMe campaign titled “Support the Shilleto Family Through the Unimaginable” to alleviate some of the financial burdens the family is facing during this crisis.

On the fundraising page, Alysha describes Charlie as her “kind, funny, gorgeous two-year-old nephew,” under the care of a “brilliant paediatric oncology team” at LGI. She emphasised the emotional toll the diagnosis has on the family, stating, “No family is ever prepared for this, emotionally or financially, and the strain a diagnosis like this brings is enormous.”

For Charlie, surgery is currently not an option, and the side effects of chemotherapy have made it difficult for him to live a normal life. He requires full-time care and has been isolated from social interactions, which has affected his ability to play with children his own age. Alysha highlighted the emotional strain on the family, noting that they are working to maintain a sense of normalcy for Oliver while supporting Charlie through treatment.

Every donation made through the GoFundMe page is aimed at covering travel costs to and from Leeds, living expenses during treatments, and creating cherished memories on the days Charlie feels well enough to leave the hospital. “I’m asking you for help, because my brother and his wife never would,” Alysha added.

As the Shilleto family navigates this challenging path, they remain focused on Charlie’s treatment, hoping for positive outcomes in the face of adversity. The community’s support through fundraising efforts is vital as they confront the unimaginable challenges ahead.