A young mother from Essex has shared her harrowing experience of watching her six-year-old daughter battle a rare and potentially fatal immune disorder, following a seemingly innocuous rash. Starr Downs, 23, initially believed that her daughter Esmae Smith’s symptoms were due to allergies or changing weather conditions.
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Esmae first presented with a rash on her hands and feet on April 6. Despite Starr’s thoughts that it was just a minor issue, the child’s condition deteriorated rapidly, accompanied by soreness around her mouth and a bloodshot eye. After seeking assistance at a pharmacy, which suggested the possibility of hives, Starr applied an anti-itch cream while waiting for a more thorough medical evaluation.
However, within days, Esmae’s symptoms worsened significantly. By April 8, Starr faced a distressing situation where her child struggled to move and had a high fever reaching 104 degrees Fahrenheit. “She couldn’t really walk; she was limping,” Starr said, recalling the challenges of navigating the stairs to their doctor’s office. “Every step we took, she moaned that it hurt.”
The alarming journey led to Esmae being admitted to the hospital where, over the course of eight days, medical staff worked tirelessly to ascertain the cause of her alarming symptoms. “They kept saying they weren’t sure what it was,” Starr recalled, reflecting on the uncertainty and anxiety that filled that time.
Eventually, Esmae was transferred to Great Ormond Street Hospital in London, where doctors diagnosed her with Macrophage Activation Syndrome (MAS). This rare condition causes the immune system to become overly aggressive, attacking healthy cells in the body rather than merely fighting infections. In a bid to explain the complex situation, doctors likened the child’s immune response to the classic video game Pac-Man, where the immune cells are described as consuming everything in their path, unchecked and harmful.
Starr was crushed by the news. “I just broke down and started crying,” she admitted. The diagnosis was not only overwhelming but also illuminated the severity of Esmae’s condition, which had been quite healthy prior to this episode. The young mother expressed her fears, saying, “[It’s] really scary because I’m so young, and she is my only baby.”
Once a diagnosis was established, it became clear that immediate action was necessary. Doctors initiated a course of chemotherapy due to the life-threatening nature of Esmae’s health. “We had no choice but to start the chemo drugs because she’s deteriorating really badly,” said Starr. Remarkably, the treatment has shown signs of effectiveness, as Starr noted, “It did bring her back ’round.”
Though it remains unclear when Esmae will be allowed to return home, medical professionals anticipate that she will require daily immune-suppressing injections post-discharge. According to Starr, it is believed that Esmae’s MAS may have been triggered by an underlying autoinflammatory condition known as systemic juvenile idiopathic arthritis (sJIA).
In the midst of these challenging times, Starr launched a GoFundMe campaign to assist with the financial burdens associated with Esmae’s treatment and recovery. The funds raised will help cover costs related to travel to and from the hospital, Starr’s necessary time off work, and the expenses of maintaining a stable home environment while Esmae undergoes lengthy treatment.
As she navigates this frightening chapter, Starr noted that the effects of chemotherapy have led to hair loss for Esmae and complications such as a blood clot in her arm due to her PICC line. “This has been the most terrifying and heartbreaking time of our lives,” Starr revealed, as she continues to witness her daughter endure immense pain and fear.
Highlighting the strength of their bond, Starr concluded her appeal by stating, “Any donation, no matter how small, will help us support Esmae through this incredibly tough fight.” As the family faces an uncertain journey ahead, they remain hopeful and grateful for the medical support they have received thus far.