Young Mountain Lake girl reveals her own true beauty despite difficult diagnosis; Supporters rally with fundraiser
Butterflies can’t see their wings. They can’t see how truly beautiful they are, but everyone else can. People are like that as well.
One six-year-old “butterfly” – fragile, but yet oh-so-tough – has been flying these past four-plus months right into the eye of a storm blowing so many difficult things her direction. Addyson “Addy” Janzen, daughter of Kim Janzen and sister to Delainey Janzen, all of Mountain Lake, is that beautiful butterfly. And, although she doesn’t realize it herself, to all of those she touches is revealed her own true beauty.
This past January, a MRI (magnetic resonance imaging) of Addysons brain revealed that she has a brain disorder called Metachromatic Leukodystophy (MLD).
It is a genetic disease – and there is no cure. It will progress – and eventually take her life.
There was no sugar-coating palatable enough to mask the bitter taste of the timetable for the progress of the disease.
The two possible treatment options given Kim were- gene therapy or a stem cell transplant.
However, Addyson, a kindergarten student in the classroom of Nicole James at Mountain Lake Public Elementary School, was ruled out by consulting physicians as a candidate for gene therapy. And, the decision on whether or not to move ahead with the stem cell transplant choice was one Kim and her family had to weigh carefully – both pro and con – because a stem cell transplant is very hard on the health of the patient.
As Kim explains, “Addy would become very sick while undergoing a stem cell transplant. She would endure a lot of pain and suffering. They would have to use high doses of chemotherapy (more than is typically used on a cancer patient) to condition her body to get ready for the donor cells that would come from cord blood.
“There would be no guarantees. There would always be the possibility that her body could reject the new cells. And, since she is already showing signs of the disease, it is less likely to completely stop its progression. Doctors also told us that almost all of the patients with MLD who had the transplant still ended up in a wheelchair – the leg braces not support enough, as well as lost the ability to eat, talk, sit up and see within a few years after a transplant.”
It boiled down to the toughest question Kim has ever had to answer – one no parent wants to imagine having to respond to: Put Addy through all of that to maybe possibly few more years with daughter – or just let the disease run its course – and rather, focus on the quality of her life?”
After reaching out through prayer for clarity and peace on making the right decision – and receiving the same from the prayers of others, the way forward became painfully obvious.
Shares Kim, ” I don’t think I could put her through all the pain and suffering of the stem cell transplant to just possibly have a few more years. I don’t think I could risk losing her now (due to complications of the transplant) versus giving her the best quality of life by just letting the disease run its course. I’m scared to death to close this door because I know, once it’s closed, I can’t open it again. But, I have to have faith that I’m making the best decision for Addyson’s quality of life. We have a long, hard road ahead but I’m going to make sure we have as much fun as possible! I will do the best I can to carry on and keep life positive for Addyson’s sake. She is still here and full of life! We will have to take each moment to make new memories!”
A slice of such a life event ushering in new memories included an April 28-May 4 trip to Disney World in Florida. Making the trip possible for Addy’s immediate and extended family – including Grandpa Dean and Grandma Deb Janzen – were Make A Wish Foundation and Give Kids The World.
Those days as a family together in faraway Florida, indeed, all time spent with family, friends and classmates is precious – for they are moments that capture the flight through life of a “butterfly” named Addyson.
Addy’s Mat Hatter fundraiser
This Saturday, May 9, Jaque Niss-Radtke, Jessica Blom, Nikki Shannon and Shawna Kunkel will be hosting a fundraiser for Addyson and her family – Addy’s Mat Hatter Tee Tournament – at the Mountain Lake Golf Course and Clubhouse.
It is stressed that this event is definitely NOT just for golfers.
The day will kick-off with a 9-hole, 4-man best ball golf tournament. The rest of the afternoon and evening will include a free-will donation hot chicken sandwich supper beginning at 5 p.m., followed by Bingo and a basket and meat raffle.
Supplemental funds will be provided by Thrivent Financial.
