Costa News Spain Breaking News | English News in Spain.
In 2018, Simon’s moms and dads, Emma and Mark, that had actually transferred from the UK to Málaga, Spain, were faced with one of the most disastrous information of their lives. Their energised four-year-old boy, Simon, had actually been detected with Infantile Batten Illness, an uncommon and deadly neurodegenerative problem. Simon, that had actually been running and chuckling simply months previously, was currently dealing with a modern loss of electric motor abilities, vision, and speech. What ruined them most was discovering that Simon was just anticipated to live up until the age of 10 or 11. The medical diagnosis squashed their wish for his future, and in a split second, their lives came to be fixated taking care of their boy, whose problem would just intensify with time. Read more ……..
Emma and Mark had moved to Málaga seeking a peaceful, sun-filled life by the Mediterranean, far from the cold British winters. But their idyllic life quickly turned into one of daily struggles as Simon’s condition advanced. The early symptoms were subtle—clumsiness, falls, and a slight delay in his speech. At first, they dismissed it as part of normal childhood development. But as the seizures began and his motor skills declined, they sought medical help. After a series of tests in local hospitals and consultations with specialists, they received the life-altering diagnosis: Batten Disease, for which there was no cure.
The family found themselves trapped in an overwhelming cycle of medical appointments, therapies, and hospital stays. Despite the excellent healthcare in Málaga, the emotional toll of watching their son deteriorate was unbearable. Emma and Mark took turns caring for Simon around the clock, but the exhaustion was relentless. “We were physically and emotionally drained, trying to juggle everything while knowing there was no way to fix it,” Emma explained.
However, hope came in the form of a local children’s hospice, which specialized in providing care for children with life-limiting conditions. The hospice became a lifeline for the family, offering them a place where Simon could receive therapeutic care and where they could receive much-needed emotional support. Simon participated in hydrotherapy, which helped soothe his muscles and provided moments of relaxation, though he could no longer walk. While the hospice couldn’t cure Simon, it gave him—and his family—moments of comfort.
The hospice wasn’t just for Simon; it was for his whole family. His siblings, 8-year-old Tom and 2-year-old Lily, were given the chance to participate in programs designed for siblings of terminally ill children. Tom, who had been quietly struggling with his brother’s illness, found solace in connecting with other children in similar situations. “Tom needed that space to express his feelings. He was hurting, too, and it gave him a sense of understanding that he couldn’t find anywhere else,” Mark said.
Despite the heartbreaking reality that Simon’s life would be cut short, Emma and Mark shifted their focus from fighting the disease to making the most of their time with him. They found ways to celebrate life even in the midst of such grief. They took Simon on walks along the stunning Málaga coastline, letting him feel the warmth of the sun on his face, smell the salty sea air, and hear the gentle sound of the waves, even though he could no longer see the beautiful Mediterranean sunsets he once loved.
Every holiday was celebrated early—Christmas, birthdays, and even family traditions were brought forward to ensure Simon could experience them. “We made sure that every day with Simon was filled with love. We wanted him to feel joy, even as his condition got worse,” said Emma. These small moments became the family’s treasures, moments they would carry with them forever.
As the years passed, Simon’s condition worsened, and by age eight, he was almost entirely immobile. The hospice continued to provide care and support, guiding Emma and Mark through the difficult conversations about what would come next. The staff helped the family prepare for the inevitable while still encouraging them to create meaningful memories.
In the summer of 2024, Simon’s condition entered its final stages. His parents were by his side constantly, and the hospice provided around-the-clock care to ensure Simon’s final days were as peaceful as possible. On a quiet evening in July, with the sun setting over Málaga’s golden beaches, Simon passed away surrounded by his loving family. His last moments were spent wrapped in the warmth of their love, a bond that had only deepened over the years.
Though devastated by their loss, Emma and Mark found solace in knowing they had done everything they could to make Simon’s short life as full of love and happiness as possible. The hospice and the local community had been their lifeline throughout the entire journey, offering not only physical care for Simon but emotional support for the entire family.
Since Simon’s passing, Emma and Mark have dedicated their lives to raising awareness about Batten Disease and advocating for better support systems for families with terminally ill children in Spain. They continue to work closely with the hospice, raising funds and providing resources to ensure that other families can receive the same care and compassion they experienced during Simon’s illness.
Emma reflects on their journey with both sadness and gratitude. “Simon taught us that life is measured not by the number of years but by the love and memories we create. He gave us a lifetime of love in his short years, and for that, we will always be grateful.”
While the pain of losing Simon is something they will carry with them forever, Emma and Mark have found strength in the support of their Málaga community and the memory of their brave, beautiful boy. Simon’s legacy lives on in the love that surrounds them, a reminder that even in the darkest times, there is always light.
