Nomination Story:

Ferris is our youngest of three girls and was born with a rare genetic condition called Mainzer-Saldino syndrome. By 14 months of age, she was in kidney failure requiring dialysis. The first couple years we were focused on growth to get her to a size where she could have a kidney transplant. In March of last year, we got the call we had been waiting for! Unfortunately, there were major surgical complications, and the kidney was removed just hours later. It was a devastating loss for our family. It felt like the worst thing ever, but we were incredibly aware that it could have been worse. She recovered and by the end of April we got to bring her back home to Kamloops with us. Without a kidney, on dialysis with no plans for a transplant anytime soon. We were told to enjoy her and make memories so that is exactly what we have done!

By the end of summer, we learned Ferris’s immune system created a lot of antibodies and she was now considered “highly sensitized”. It basically means that it will be incredibly hard to find her a match. Less than 3% of the entire population would be a potential match for her. Combined with the need for very specific anatomy, we were told we would be looking for a needle in a haystack. Statistically we were told this could take years, even with her being at the top of national lists. Medically, Ferris has had a really hard year with lots of hospitalizations and zero growth. Mostly viral infections through last winter. She got critically ill from COVID-19 over Christmas. She developed intracranial hypertension this spring. Wrapped up summer with peritonitis where she was flown down to BCCH for treatment.

We have travelled down to BCCH 10 times just since Mother's Day this year. At least 60 nights spent at Ronald McDonald house or in-patient. She’s had 5 lumbar punctures, multiple IV’s, antibiotics, blood work, x-rays, ultrasounds, MRI’s. Midsummer she was referred and accepted into the palliative care program at BCCH. Realizing that a kidney may not come along, our focus has shifted to just making sure she has really great days. That her experience of being unwell is as good as it possibly can be. That her comfort and quality of life come first. Always.

THE BIG NEWS!!!! Earlier this year we were told that there was a living donor that was a pretty good match for Ferris! It was very quickly followed by the surgeon telling me he wasn’t happy with the anatomy and felt the surgery was too risky. He said no. We were encouraged to have the Toronto sick kids transplant team review her case and the living donor to which we of course agreed! Months went by and finally we heard back from Toronto. Their surgeon felt that he could do the surgery and they wanted Ferris to come to Toronto and be assessed for a kidney transplant. We went to Toronto in September and did the assessment over a few days. A couple of weeks ago we met again via Zoom and while A LOT was discussed, the take-home is that they will proceed with the transplant using the approved living donor.

This is truly exciting news for Ferris and for our family. A successful transplant would give her a chance to experience life without dialysis. One we can hardly even imagine, but when we do, it looks so sweet!!Shes currently on dialysis for 14hours every night. She’s on a lot of medications. She has very little physical energy. She has no appetite. She doesn’t feel well a lot of the time. All of that can be made better if this goes well. While we recognize it's exciting and what she needs, we have a lot of fear over attempting this again. The first time didn’t go well at all and at the time I swore we would never do that again. However, quite quickly she has shown us how fragile her life is and that we must try again. We were told that she would be the first date they get in the new year. Hospitals in Ontario are overwhelmed right now, and surgeries have been put on hold. This will affect the timing of the transplant, but we are hopeful that it will still happen sometime early in the new year. We should get the date 4-6 weeks ahead of time and would need to arrive in Toronto 2 weeks prior to the surgery. We are expected to be there for roughly 3 months. So that’s what’s next! A kidney transplant in Toronto!

We never could have never imagined that Ferris would be in kindergarten and actually going to school this year! Yet here we are! To our surprise, she’s only missed a handful of days and loves going! The school was nothing short of amazing. Not only in supporting Ferris and her complex medical needs but supporting our whole family. We have felt love from Lloyd George countless times over the past 5 years and we continue to be grateful for this community. We were asked how to best help us and if fundraising was okay. The perpetual loss of income due to all the hospital admissions and time spent at BCCH is hard to keep up with. While we will have accommodation provided at a minimal cost, and the flights taken care of for Ferris, Pat and myself, we still must get the girls there and grandma to help look after Ksenia and Tavia. Financial support or airmiles to help get our family there would be very helpful. I have been working full-time through most of this as a respiratory therapist and my husband is in his 4th year of the nursing program at TRU. I will get off work as soon as we get the date. EI and student loans aren’t the most solid of financial plans! 

Truthfully, we would have drowned years ago if it weren’t for all the fundraisers and community support. Continually being on the receiving end of acts of kindness is humbling to say the least. We have been fortunate enough to be literally carried through this whole experience by a huge community of people that love us. Because of that we have been able to keep our home, make memories with our girls and stay together during some of the hardest times. We share her story because she’s such a bright light and lives an unbelievable life. She seems to touch the lives of everyone that gets to know her. Someone once told me; everyone needs a little bit of Ferris in their life! I couldn’t agree more!

Ferris has been sick since the young age of 14 months. Her normal has been in treatment, having a transplant that did not take, feeling so ill she is not able to eat. Her father has had to step away from work to help take care of the kids at home and Lindsey (her mother) has had the weight on her shoulder. They are constantly looking for new treatment and have found another donor in Toronto.

They will need to travel once again for this treatment and have depleted all of their savings. If it was not for the support of the community, Lindsey says she would not be where they are today.

Ferris is now in kindergarten something her mother did not think would be possible They have spent over 60 nights at the Ronald McDonald house, she has had 5 lumbar punctures, multiple IV's, antibiotics, blood work. Things a little girl should never have to experience.

This family is so deserving and I hope we can help relieve the financial stress so they can focus on helping Ferris get better.