Luke Collins


On July 16th 2010, at just age 7 months old, Luke Collins was diagnosed with a Visual Pathway Glioma (a brain tumour on his optic nerve). What was to follow was every parent’s nightmare. Luke spent a lot of time in hospital initially having tests and a Hickman Line was inserted. Chemotherapy started a week later.

The chemo made him very sick and caused neuropathy (feelings of numbness and pain). Sadly the tumour didn’t respond and by 18 months old, Luke lost his eyesight completely. This was absolutely devastating to us. Eventually a chemotherapy protocol was found that began to work, but at a cost. Luke spent almost 6 months in hospital being fed directly into his veins (as sickness was horrendous and he’d become emaciated).

Then sadly, this chemotherapy began to affect his hearing, so was abandoned.

Many more protocols were attempted (and abandoned) but the tumour kept growing. In 2013, a new drug for the U.K., Avastin, was given and Luke had the best year of his life, even going to school and making friends for the first time ever! After a year, this was stopped to give his body a break, and, to everyone’s horror, in January 2014, the tumour began to grow uncontrollably. Luke stopped walking and drifted in and out of consciousness in hospital.

After a trip to Alder Hey in March, for de-bulking surgery, we were hoping to travel to America for Proton Beam Radiation. Sadly not enough tumour was taken away in Liverpool for radiotherapy to be a viable option.

Luke passed away in my arms, after a life-long battle in June 2014, leaving a massive void in our lives.

Life will never be the same…