Baby boy has died weeks after parents noticed problem with his left eye
Max Galleni died at just 10 months old.
Born in July 2015, his parents Dan and Jane noticed a problem with his left eye that did not open properly and appeared swollen and red shortly thereafter.
The couple, from Cheam, just across the border from Surrey, sought advice from ophthalmologists and ultimately a CT scan was done.
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The scan detected a shadow on his brain, later identified as a brain tumor.
Their three-week-old son was scheduled for a biopsy and volume reduction surgery, and was given a week to grow taller and stronger in preparation.
He had four surgeries in his short life, the first in August 2015, but his tumor was so aggressive it grew back in 10 days.
Dan, 45, said: “A few weeks later we returned to Great Ormond Street Hospital and were taken to the ‘Hall of Fate’ only to be told there really was no hope because that Max’s tumor was incurable and was growing extremely quickly with no options other than further life-threatening surgery.
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The sick infant underwent another volume reduction operation before being transferred to Shooting Star House in London for palliative care, after which he appeared to get stronger.
Dan said: “We were told there was nothing more to do, but Max got stronger and started to be a baby. We even put him on solids at one point and sat in a chair; we took him swimming every day and I started to think the doctors could be wrong.
Unfortunately, that hope was short-lived, with Max developing an additional complication with his left eye that required the removal of a layer of tissue and caused suspected vision loss. Her tumor also began to grow behind her right eye, causing it to protrude, and became so severe that her parents had to plead for medical intervention.
Dan said, “Jane and I had to sit in a room with the whole team of consultants and advocate for the tumor to be removed before it grew Max’s eye. They operated for his comfort, which was a huge relief, and then sewn up his eye to let it heal.
In the end, Max’s teratoma turned out to be too aggressive and complex, and he passed away peacefully overnight in his mother’s arms in May 2016.
Losing him became the catalyst for the regular fundraising undertaken by Dan, including annual 300 mile bike challenges and a day of golf to benefit Brain Tumor Research last year which raised £ 14,000. despite the impossibility of going ahead due to a heavily flooded course.
Charlie Allsebrook, Community Development Manager for Brain Tumor Research, said: “Max’s story is absolutely heartbreaking and a stark reminder that brain tumors are blind, affecting anyone at any age, including babies and young people. children. We are so grateful for Dan and Jane’s support as we remain committed to funding vital brain tumor research to prevent other families from being torn apart by this devastating disease.
Dan and Jane, who also have a 10-year-old daughter, shared their story to help raise awareness about the disease.
To find out how you can support brain tumor research, click here.
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