If you were in attendance on Feb. 1 as the Kamloops Blazers played host to the Prince George Cougars, you may have seen Ferris Backmeyer at centre ice.
Ferris took part in the ceremonial face-off prior to what was the second annual RE/MAX Presents: WHL Suits Up with Don Cherry to Promote Organ Donation game.
Ferris and her father, Patrick, were at centre ice, along with Dorothy Drinnan and Margaret Thompson, two women who have grown to be close friends since both have had kidney transplants.
Ferris and her family are hopeful that she soon will join that club, too.
Yes, Ferris, who is 2-1/2 years of age, needs a kidney, and her mother, Lindsey, has turned to Facebook to announce that the search for a donor officially is underway. In other words, potential donors now are able to contact the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver
First, though, you should get to know Ferris, who made quite an impression when she and her father joined us a while back for a gathering of the Kamloops Kidney Support Group.
Michael Potestio of Kamloops This Week wrote about Ferris in April 2018.
“A few weeks after she was born,” Potestio wrote, “Ferris, now 14 months old, was informally diagnosed with Mainzer-Saldino syndrome, a disorder characterized by kidney disease, vision loss and misshapen bones.
“The disease is caused by gene mutations and is so rare there are only about 20 known cases, according to the U.S. National Library of Medicine.
“After she was born, Ferris wasn’t gaining weight and subsequent blood work showed abnormalities with her kidneys and liver.”
At that time, Lindsey told Potestio:
“The scariest part in the first few weeks was we didn’t know what was going on. And she was admitted to (B.C.) Children’s Hospital back when she was three weeks old and nobody really knew what was going on.
“It’s a bit disconcerting when the medical professionals can’t give you a diagnosis for your kid.”
Genetic testing later confirmed the diagnosis, and it wasn’t long before Ferris’s kidneys failed.
The Backmeyers, who also have two older daughters, have spent a lot of time at BCCH in Vancouver with Ferris, especially in the early days of kidney failure as medical staff got her started on dialysis. She has been doing peritoneal dialysis (PD) and it took a lot of testing to see just how much of the dialysis fluid her body comfortably could hold. Ferris now has been doing PD at home for 18 months.
In PD, the patient is hooked up to a cycler every night — yes, seven nights a week — and fluids are used to absorb and drain toxins from the body via a catheter that is implanted in the peritoneal cavity. The patient carries fluid all day in that cavity, then repeats the draining process nightly.
Ferris has struggled to gain weight, which has complicated her situation. She needs to get to 10 kilograms before a transplant can take place.
But now it seems that she is making progress in that area.
Lindsey recently posted this on Facebook:
“We just got back from B.C. Children’s Hospital from one of our biggest trips ever and it was the first time I didn’t have (husband) Pat with me the whole time and first solo trip back with a 2 year old that doesn’t nap!
“She let them do all the things and the only tears we saw were with labs. She had the patience of a saint and literally seemed to be handling things better than I was. Hours of different consultations, 2 sets of labs, a bunch of X-rays, a dentist appointment and a hearing test!
“The initial screening for kidney transplant has officially begun!
“Little miss remains on the lowest side for weight and height that they will transplant, and growth has slowed again considerably. Praying for more growth!
“As for the donor part of things, we have been given the go-ahead to have any interested donors contact the St. Paul’s living donor program at 604-806-9027, citing Ferris as the intended donor.
“Her blood type is ‘B’ but they encourage all interested donors to contact St. Paul’s directly. They then mail out a package.
“Ferris’s side of the process is completely separate from the donor side and the donor side is 100 per cent up to the donor. We have been told the donor process can take just as long as the transplant workup for Ferris, so starting the search now is recommended.
“I am sharing this publicly because I want to get the word out. She deserves to live a healthy life and we are sooo ready to move on to the next phase. Social media has proven to be successful and altruistic donors is totally a thing! So let’s do it!! Let’s find Ferris a kidney!!”
Understand that you don’t have to be a match in order to help Ferris get a kidney. If you aren’t a match, the Living Donor Paired Exchange program will be used to match you with another donor/recipient pair in a similar situation.
The age and size of a donor isn’t a big deal, either. What is important is the health of the donor and his/her kidneys.
There is more information available right here at Providence Health Care’s website.
If you are interested in more contact information, here you go:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Tel: 604-806-9027
Toll free: 1-877-922-9822
Fax: 604-806-9873
Email: donornurse@providencehealth.bc.ca
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