Ten-year-old Ava Maxwell and high-flying Waikato paratriathlete Shannon Cleave share more than just spunky tenacity and a sense of humour.
They both have albinism, a genetically inherited condition affecting roughly one in 17,000 New Zealanders. It results in a reduced level of melanin pigment in their skin, hair and eyes, causing visual impairment and making those with the condition more susceptible to skin cancer.
But what Ava and Shannon lack in melanin, they more than make up for in grit. Ava is finding a sporting niche of her own that will help her enjoy as normal a life as possible with her peers, and Shannon is shooting for a spot in the next Paralympics; last week’s Cambridge News carried a story on her latest success.
They also both marked International Albinism Awareness Day on June 13, a United Nations-declared day aimed at recognising and protecting those with albinism. The theme for the awareness day 2019 – Still Standing Strong – supports the removal of stigma, discrimination and barriers in health and education experienced in many countries.
Ava is a student at Goodwood School, and is believed to be the only person with albinism living in Cambridge.
Shannon visited the school for a few hours on June 13, where she talked to the youngsters about the condition, demonstrated the best way to help a sight-impaired person, and answered a raft of questions. The students also watched a ‘live’ discussion with one of the many ‘Be My Eyes’ volunteers around the country. Using an online video connection, the free app ‘Be My Eyes’ puts sighted volunteers just a fingertap away from those needing help in reading anything. The Goodwood youngsters watched the Auckland-based volunteer as he helped Shannon read the title of a book.
Ava’s mother, Rachael Maxwell, described Shannon as “inspirational” and said she had been particularly successful in building Ava’s confidence.
“When I saw that Albinism Awareness Day 2019 was coming up, I arranged with the school for Shannon’s visit,” said Rachael. “It is really important to build greater awareness around albinism, what it is and how to interact with those who have the condition. The more people understand, the better for those with it.”
Also at Goodwood on the day was Debbie Barker, Ava’s resource teacher from BLENNZ Hamilton – the Blind Low Vision Education Network NZ. The network helps build skills for life among those with vision impairment. Debbie’s commitment to Ava of several hours a week will continue until she is 21.