Robyn von Meding had – until lunchtime on Tuesday – lush, wavy, strawberry blonde hair that extended to her waist. A few snips later and it was gone – all in the name of a good cause.
It was during a family trip to the movies that the 10-year-old Greystones girl thought of the idea. Her mother, Roberta, had asked Robyn and her older sister, Juliet, if they wanted back-to-school haircuts.
Inspired by her cousin, who had done a charity haircut, Robyn and her mother decided to donate Robyn’s hair to the Rapunzel Foundation in Co Wexford, a voluntary organisation that collects 14 inches or more of natural hair to make wigs for children and adults living with alopecia and cancer.
But Robyn also wanted to raise funds for Child Vision, a non-profit organisation that supports visually impaired children like her by providing school supports, such as large print books, and hosting on-site camps and sports activities.
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“I have albinism and I thought I could help them because they make books for me, so this helps them as well,” said Robyn.
The schoolgirl was diagnosed with oculocutaneous albinism (OCA) at six weeks old. Albinism is a rare genetic condition that affects the production of melanin, the substance responsible for hair, eye and skin pigmentation.
An estimated one in 20,000 people are affected by oculocutaneous albinism. Neither Roberta nor her husband have a family history of the condition.
“Robyn is photophobic, sensitive to the light, and her depth perception isn’t great,” said Roberta. “When she was little, we didn’t know how she would cope or what her sight was like.”
Although Robyn is severely vision impaired and registered with the National Council for the Blind of Ireland (NCBI), she attends a mainstream school with the help of a special needs assistant.
Bubbly and confident, Robyn enters fourth class on Thursday and said she was looking forward to seeing all her pals.
Roberta said having albinism hadn’t affected Robyn hugely: “When she gets tired, she needs a break, but the sky’s the limit for her.”
Although Robyn loves gymnastics and swims, tennis is her favourite sport, and she has a mean forehand. Robyn plays in a visually impaired junior tennis league in Shankill, where five other players in her league have albinism. A bright yellow tennis ball with a jingling bell inside is used so the players can track the ball as it flies across the net.
To raise money for Child Vision, the family started a GoFundMe campaign last Sunday with the intention of raising €500. Within 48 hours they had surpassed €1,000. Now, they’re hoping to raise €1,500 for the charity.
On Tuesday afternoon, Robyn, Juliet and Roberta entered Susan Collins Home of Hair in Greystones. The Co Wicklow salon is registered with Rapunzel Foundation, so Robyn’s haircut was free, and the salon will take care of shipping the donated hair to the foundation.
Stylist Sinead Campbell sectioned Robyn’s hair into two braids, measured 14 inches on each side and then cut the two braids off. Afterwards Ms Campbell styled Robyn’s hair in a steep angled bob cut.
When Robyn first saw her new cut, she was ecstatic. “I love it! It’s really cool.” She thinks her classmates will be surprised when they see her on Thursday, the first day of school, although most knew she was getting a cut.
“They might be like ‘Who are you?’ or ‘Why do you look so different?’ And if they don’t like it, too bad, it’s my hair,” said Robyn.