When the community first learned about a little girl who had a rare genetic disease and there was no government funding for research, the community did what is always does in time of need, it came to together.
Olivia Little is a one in 200,000 to have Cystinosis. In fact, there are only some 2,000 people with Cystinosis in the world and only about 100 in Canada.
Now, in 2019, it is hard to also believe where the time has gone since the first ‘Swing, Shoot and Liv’ Classic Golf Tournament. Olivia’s parents, Erin and Chad, have undertaken to raise funds for research in the hopes of finding a cure for the disease. The first golf classic attracted 134 golfers and raised $20,000. Then, the next year’s Classic saw 200 golfers come out and raise more than $100,000.
This year, the 2019 Golf Classic, that was again held at Saugeen Golf Club, had more than 200 golfers and sponsors such as Bruce Power, several of their suppliers, local businesses and individuals who have all come on board to raise money for Cystinosis research.
All proceeds from the tournament go toward research into a cure of Cystinosis because, given that it is so rare, there is no government funding of any kind for either research or individual assistance.
In 2016, Erin Little introduced the Campbell family of Wallaceburg whose son Alan was also diagnosed with Cystinosis and who first came to the 2016 golf tournament. The chances of meeting two children with the disease in the same room is one in three million.
On Saturday, September 14th (2019), Alan with his parents, Katelyn and Adam, returned to the tournament with Alan’s little sister, Nora, who turned two the day before … and who also has Cystinosis.
What the Campbell family didn’t know at the time that Alan was diagnosed was that the nephrologist was the same doctor who knew Olivia and her family. They say that things happen for a reason. While that may or may not be true, it was through that doctor, that the Campbells and the Littles found each other.
“Meeting the Littles completely changed everything for us,” said Katelyn Campbell, “and made everything more bearable. We gained more knowledge about things like administering medications and diet and Alan is feeling so much better. Alan is school age now and he has to learn how to navigate with his peers and take his medications while he is at school. These are challenges that are just a part of life. Alan and Nora are thriving with their treatments. We get to be their parents and they get to have each other.”
She went on to say that they also are “… blessed with a community that wants to help. From a neighbour who helps with the meds to family who cuts our grass and helps to clean our home and others who help drive us to appointments. People who take the time to learn what Cystinosis really is. We are also lucky to have a medical team that supports our family and the knowledge that a cure is being worked on.”
According to Campbell, Erin Little has given many amazing ‘tips’ to help the family that even physicians don’t know anything about. They are tips about everyday living for a family experiencing Cystinosis. “The Littles are so incredibly positive,” says Campbell, “and they have given us so much hope.”
Tearfully, Erin Little said that she cannot believe how many people come out and how many care, “… care about a little girl named Olivia.”
What is also a given is how beautiful, loving and happy these children are.
One can only hope that a cure for this disease will soon be found.