This will be the first year that 10-year-old Caroline Anson doesn鈥檛 get to sing to her father as he pushes their tandem bike up a steep hill in Langley during a cycling fundraiser.
鈥淪he just says 鈥業t鈥檚 okay Daddy, you don鈥檛 have to do the whole ride, but I will,鈥� Mark laughs.
He and Caroline will still ride in the 5th annual on June 2. But this year they won鈥檛 be on the same bike.
鈥淚鈥檓 just getting too old and fat 鈥� I鈥檝e outsourced teenagers to ride with the kids,鈥� says Mark, adding he will miss his daughter鈥檚 tireless singing throughout a day-long event.
Caroline and her 12-year-old brother Rowan both have . They were born nearly deaf and started losing their vision around the age of three. Today, they are both night blind.
Because of the early diagnosis, the Anson children were able to get surgery for cochlear implants. While their balance is still impaired, they鈥檙e able to hear with the devices turned on and are enrolled in regular classes.
鈥淲e work around the issues that come up at Scout camp, when they have to put up tents in the dark, but we鈥檙e working with a limited time frame for the rest of their sight, 鈥渟ays their mother Shelagh.
Cycle for Sight raises money for the . At first, Rowan and Caroline didn鈥檛 make the connection between their family and the organization, a seven year long relationship in the making. They thought they were riding for other people and were excited to meet new friends such as Paralympics swimmer Donovan Tildesley, who was born blind.
It wasn鈥檛 until two years ago, when the Ansons had the opportunity to take part in a clinical trial looking to stop the progressive vision loss caused by retinitis pigmentosa, that Shelagh and Mark told their kids about Usher Syndrome.
鈥淲hen they first found out their diagnosis, they were really keen to find cures to help others,鈥� says Mark, adding that his kids are champions of keeping their parents optimistic. 鈥淔or me, there were lost opportunities for their future but they don鈥檛 see it that way at all.鈥�
Dr. Cheryl Gregory-Evan鈥檚 is leading the research project that Rowan and Caroline donated their cells to. With the New Jersey-based pharmaceutical company PTC Therapeutics Inc., she and her team have developed a drug, Ataluren, with the ability to read through the stop code of the Anson kids鈥� genetic mutation as well as those of multiple diseases.
鈥淭he fact that it鈥檚 already approved in Europe works in our favour,鈥� says Dr. Gregory-Evan鈥檚 of Ataluren. The clinical trial is expected to take another three to five years, though the FDA and Health Canada has authorized its use to treat Duchenne muscular dystrophy.
鈥淭he drug would only stop the progression from getting any worse,鈥� says Dr. Gregory-Evans.
While Cheryl says her children don鈥檛 worry about their gradual vision loss, she and her husband find it difficult to imagine what the lives of Rowan and Caroline, who are dependent on technology to hear, will be like if their vision continues to deteriorate.
鈥淚t鈥檚 scary for us but we have to focus on being hopeful. There鈥檚 no use in making today a bad day so we try to stay present,鈥� Shelagh says.
Today, she鈥檚 busy in the kitchen preparing food for the festivities surrounding Cycle for Sight, one of two main fundraisers put on annually by FFB. The other is a comedy event called Comic Vision, which this year is on Nov. 2.
Caroline and Rowan are on Team Anson and Then Some for this year鈥檚 cycle, which has already reached the $100,000 mark. The team will be wearing yellow jerseys for the second year in a year to demonstrate their roles as top fundraisers. (They are in second place this year, having raised more than $30,000.) The colour yellow is appropriate considering much of their fundraising was done through lemonade stands.
They鈥檝e come a long way since having to tape styrofoam blocks on their shoes in order to reach the pedals of their tandem bikes.
Shelagh says the kids鈥� aspirations change daily, and that they鈥檙e interested in hobbies ranging from martial arts, horse riding, rock climbing and singing to their own tune in choir.
鈥淚 think they still participate mostly to help others. I don鈥檛 think they think about it personally. They don鈥檛 worry each day about the vision,鈥� says Shelagh.
You can contribute to Team Anson and Then Some .
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