10-year-old Riley lives in Northampton with his parents Mel & Ben, and his older brother.

When Riley was five he told his parents his vision was cloudy. Within 10 days, he lost his sight completely.

An MRI scan revealed Riley had a tennis ball sized tumour which caused Hydrocephalus with Papilledema (swelling of the optic nerve).

“This turned our life upside down overnight,” says mum Mel.

“We really struggled with it happening in lockdown. Meaning only one parent was allowed with Riley in the hospital. This has caused a lot of trauma for me in particular being given the devastating news alone. I was alone unable to navigate what I was being told while trying to protect Riley from understanding how guilty and devastated I was for him. It also affected Riley, his dad and Riley’s older brother being so far away from each other (we were transferred to Nottingham QMC from Northampton) and not being able to visit us at all while in the hospital.

It has had a negative impact on the whole family, but we like to look at things in a positive way and are so thankful that we are lucky enough to still have Riley in our lives.

Since the diagnosis Riley has enjoyed lots of trips with PASIC, including: Alton Towers, Gulliver’s Land, pantomimes and PASIC parties.

In the picture below, Riley proudly wears his PASIC t-shirt while stood in front of Oblivion at Alton Towers. He looks shocked and excited because he can feel the movement of the cart as it plunges down the vertical drop.

Having the support of PASIC has helped us to just keep things as normal as possible and bring our family together through days-out and themed parties.

“Knowing PASIC also supports countless other families too, reminds us, that we aren’t the only family going through challenging times. Perspective is everything.

Riley is an absolute warrior and has taken everything he has faced in the last five years with extreme bravery and faced it all head on. Everyone he has met on his journey falls in love with his personality. 

“Riley has found it very difficult accepting his new ways of learning, especially in school. We have faced a couple of barriers with him not wanting to learn braille, and him knowing he is learning in a different way to his classmates.”

Riley continues to receive treatment and PASIC continue to support the family.