By Tami Eagen – Sydenham Current
A Wallaceburg couple is hoping to raise some funds for cystinosis research, as both of their young children suffer from the rare disease.
Katelyn and Adam Campbell, whose son Alan, 5, and Nora, 1, have been diagnosed with the degenerative disease. Only 75 children and young adults in Canada and 2,000 worldwide have been diagnosed at this point.
“One of the first things it does is that is causes a kidney disease also called fanconi syndrome,” Katelyn told the Sydenham Current.
“So they have both. The management of that is a lot of medications. Cystinosis damages cells in the body, causing progressive organ dysfunction, starting in the kidneys and eyes, and advancing to the liver, muscles, white blood cells, and central nervous system.”
Katelyn said Alan takes 21 doses of medication every day, including: six to eight eye drops and a needle every night before bed.
Nora take 14 doses of medication a day and she will eventually catch up to her brother, Katelyn said.
“She will start eye drops probably around when she turns two,” she said.
“Those medications are given all throughout the day and the night because it is an every 6 hour schedule for one of the meds.”
Katelyn said because there are so few people with the disease, it is hard to get research dollars.
“1 in 12 Canadians have a rare disease but the number of rare diseases are almost unlimited because they are still discovering some all the time,” she said.
This is why the Campbell’s are looking for the community to help raise funds at a gala event on November 10 at Bogey’s Inn, 2845 St. Clair Parkway in Sombra .
“Everything is going to go to the Cytinosis Research Foundation,” Katelyn said.
“Cytinosis Research Foundation is American so we go through the ‘Live a Little Foundation’ because they are Canadian. That is a family that we know really well. Their daughter is eight-years-old and she has cytinosis like Alan and Nora.”
Every dollar that the ‘Live a Little Foundation’ raises goes to the Cytinosis Research Foundation for research.
At the event, music will be provided by Rob Jenkins and The Room.
There will be a silent auction, featuring items donated by the community.
“The community has really stepped up and been generous in donating different items and gifts cards and experiences for people to bid on,” Katelyn said.
Katelyn and Adam will be speaking at the event to educate those attending about what cystinosis is and what type of research is ongoing right now.
Katelyn said no cure exists for the disease but there is a doctor working on a possible cure, that could be available in Alan and Nora’s lifetime.
This specific research could also cure two other diseases, Katelyn said.
“Even though it seems like we are helping a small community that can spiral into helping so many more people.”
Advance Tickets for ‘Gala for Hope’ are $75, which includes dinner provided by The Black Goose Grill in Wallaceburg.
Cocktails are at 7 p.m. and dinner is at 8 p.m.
You can also email Katelyn at firstname.lastname@example.org or call her at 226-626-9876.
Businesses holding fundriasers for cytinosis
Two local businesses are helping the Campbell’s with their ‘Gala of Hope’ initiative.
On October 26, from 11 a.m. to 5 p.m. Madness Ink in Chatham will be doing a ‘flash tattoo’ fundraiser to help with the cause.
A flash tattoo is a smaller, simple, pre-drawn design.
Each tattoo is $100 with all proceeds going to the ‘Live a Little Foundation’.
Paul Malcolm, a tattoo artist at Madness Ink, said he has known Adam and Katelyn for a long time.
“When we heard about their situation with the new medication for their kids, we figured really the only way I can help is doing what I do, tattooing.”
Katelyn said they are excited for the support.
“We were so surprised when they said that they would be interested in doing this event,” she said.
“It is so generous. I can’t wait to see what designs they come up with because they are so talented over there.”
Madness Ink is located at 225 St. Clair Street in Chatham.
Riverport Restaurant in Wallaceburg is also going to be participating in the Campbell’s fundraising effort.
The restaurant was donating $1 from all breakfast specials purchased on October 10 and 17 and again on October 24 from 7:30 a.m. to 2 p.m.
The servers plan to match the donation, so it will be $2 total for every special.
Riverport Restaurant is located at 524 James Street in downtown Wallaceburg.