News on Ferris from Backmeyer family . . . They’re excited, but also ‘nervous, sad and scared!’

Ferris
FERRIS BACKMEYER: She may be getting closer to a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

I’m sure lots of us — heck, all of us! — could use some good news today.

Right?

OK, here you go . . .

Lindsey Backmeyer, via Facebook, told the world on Friday that Ferris, her three-year-old daughter, “is officially active on the deceased donor list!”

Lindsey added: “While I have very few details on this, I know she’s top of the list for her blood type and no one thinks we will wait long.”

The Backmeyers, including older sisters Ksenia and Tavia, live in Kamloops; in fact, father Pat often puts on the big suit and plays the role of Digger, the Blazers’ mascot.

Ferris, who does peritoneal dialysis, was found shortly after birth to have Mainzer-Saldino syndrome that results in kidney disease, eye problems and skeletal abnormalities.

Every night since Ferris was 14 months old, she has been hooked up to a cycler so that a fluid exchange can be performed via peritoneal dialysis while she is in bed.

This happens every night . . . at home or on the road. Last night, tonight, tomorrow night . . . no exceptions.

The Backmeyers also have been searching for a living donor through the Living Kidney Donor Program at St. Paul’s Hospital in Vancouver.

In February, Lindsey told Jill Sperling of CFJC-TV:

“It is preferred to have a live donor kidney. Those kidneys just typically transplant better, they do better and they typically last longer. So, for Ferris, she’s going to need more than one kidney transplant in her lifetime.

“Also, for her we need a small kidney, so a small human, a small person is what they’re kind of looking for.”

Now, though, Ferris, whose blood is B-, now is on the deceased donor list. Unfortunately, of course, a successful outcome for Ferris means that someone else is going to have to die.

The Backmeyers are fully aware that is part of having to deal with organ transplantation.

As Lindsey wrote: “With this comes so many emotions! (Older sister) Tavia says she’s excited for Ferris but also nervous, sad and scared . . . me, too, my big girl . . . me, too!”

——

If you are interested in being a living kidney donor, more information is available here:

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

——

Upon seeing the news about Ferris, Jana Tremblay wrote: “Yay Ferris! We are so excited for you.”

Jana’s son Zach, 17, also is waiting and hoping for a kidney transplant. He recently had to make the transition from peritoneal dialysis to hemodialysis because the former was losing its effectiveness.

Zach and Jana, who are from Robson, B.C., spent four months in Vancouver dealing with the transition at B.C. Children’s Hospital. They now are back home and Zach travels to Trail, B.C., four times a week in order to do hemodialysis at Kootenay Boundary Regional Hospital.

If you have any interest in being a living kidney donor, just check out the above information and make the call or send an email. Do it even if all you want is some more information.

A three-year-old girl’s family and a 17-year-old young man and his family are waiting and hoping . . .


What’s it like having a kidney transplant with a pandemic raging all around you? . . . Michael McSherry, 32, had known for 14 years that he was in need of a transplant, so when he got only a few hours notice, he was ready to get to the Pennsylvania hospital. He was in only empty hallways, anyone near him wore a mask and his wife wasn’t allowed in the hospital to see him. . . . Most importantly, the surgery was a success. . . . Priscilla Liguori of ABC27 News has more right here.




Kamloops family given OK to search for kidney donor for daughter . . . Ferris Backmeyer, at 2-1/2, in need of transplant

Faceoff2
Ferris Backmeyer joined her father, Pat, along with Dorothy Drinnan (left) and Margaret Thompson for the ceremonial faceoff at a Kamloops Blazers game on Feb. 1. (Photo: Allen Douglas/Kamloops This Week)

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

Ferris
Ferris Backmeyer, at 2-1/2 years of age, is in need of a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

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