Dad thought daughter’s hair was ‘generational thing’ until diagnosis

Joe Marsden said it was a “surprise” when his daughter Raya was born

A Liverpool dad thought it was a “generational thing” after his daughter was born with white hair. Joe Marsden, from Huyton but now living in Ormskirk, is a dad-of-four with his children, him and his partner, Sophie, all having brown hair.

When Raya, the family’s youngest daughter, was born at Ormskirk Hospital, Joe was shocked the trend didn’t continue and at first “thought it was nothing to worry about”. That was until, nearly two months after Raya was born, Joe started to notice her eyes “weren’t moving normally”.

The 41-year-old martial arts instructor told the ECHO: “We’ve got three other children and none of them were born with hair like that. It was a surprise for us. We didn’t think it was anything to worry about.

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“When she was seven weeks old her eyes started to move differently. Her eyes were moving from side to side. We took her to the hospital to get checked over and she was diagnosed straight away.”

Raya was diagnosed with a rare form of albinism that affects her sight and motor skills which means she can’t be exposed to sunlight. One in 17,000 people are born in the UK with the inherited condition.

Due to this, children with albinism are also diagnosed as visually impaired – resulting in lifelong complications for which there is currently no cure.

Joe said: “My uncle told me my mum was born with really white hair like Raya’s so we just thought it was a generational thing. My grandad was the same with blue eyes, so we thought it came from there. That was all we knew.

“We knew what albinism was but we didn’t know what it entailed exactly and so we started to worry. We were doing Google searches about it.

“Now, she is one it is becoming more visual how it’s impacting her. She is walking and bumping into things and you can really see it when she tries to navigate. She has to walk really close up to things, like toys, to see what it is.”

With this in mind, Joe set himself the mission of running seven marathons in one week to represent the seven different types of albinism. The funds raised from the gruelling challenge will raise vital funds for The University of Southampton’s paediatric albinism and blindness research.

Starting on Saturday, September 1, Joe will run just over 26 miles in various cities including London, Leicester, and Birmingham, before culminating in a final marathon in his home city of Liverpool. You can donate to the JustGiving here.

He added: “I have always believed that if you put your mind to it, you can achieve anything. And with the right training and power of positive thinking, I am determined to achieve this challenge – and make a difference to children like Raya.

“It will take a monumental effort and my final marathon in my hometown of Liverpool will no doubt be an emotional finish.”