our SMA story for Florence and Charlie’s 10K to end SMA
My daughter Florence Marigold, is three years old. We were told she wouldn’t make it past her early childhood years. Although we are thrilled she is with us, we also know there is a ticking clock. Our hearts break every time we see the progression of the disease and the determination in her eyes to MOVE, even just a little. We try our best to champion her in all that she can do, but we can’t give her legs that work or a chest that will take in deep, oxygen rich breaths.
Sometimes, when it hurts a lot, I simply tell her: you will run one day, baby girl, you will.
I have to believe that heaven will set her free to run and dance, because at this point, there is no cure for Spinal Muscular Atrophy.
Our hands are tied.
They were tied when she was four months old and we were fast-tracked to a neurologist at BC Children’s Hospital. She told us soberly that Florence had an incurable and terminal neuromuscular disease called Spinal Muscular Atrophy type 1. Her muscles would die. And she would succumb to the disease unless we had a miracle.
When she was a baby, I could carry her in a wrap. She could hold up her head. She breastfed until she was 13 months old. We even took her on a vacation—our one and only as a family. She seemed so strong. We felt like she was “beating the odds.”
But at 13 months, she was intubated and nearly died from a common cold. After that battle, she lost a lot of muscle strength. Everything changed. She could no longer swallow. We left the hospital with a boatload of equipment.
She needed a BiPap machine to help her breath, a suction machine to help her drain out her secretions she could not longer managed, and a JG feeding tube. We had boxes of canned formula and syringes in every size and rolls of tape we didn’t know where to stick. Plus we were given an oxygen and heart rate monitor. The alarms on that dang thing still give me heart palpations.
As the years have passed, Florence has lost the ability to be held upright or sit up in a Tumbleform chair or stroller. She will choke and cough and sometimes turns blue. She spends most of her days lying flat, because she’s comfortable and safe like that. She used to be able to make animal noises and say mama and dada. But she has lost the strength in her tongue, and can no longer pronounce some of the most gorgeous words every parent wants to hear.
Her bones have become very fragile and she has developed osteopenia.
After every cold, she loses a bit more strength: our hearts can’t seem to mend fast enough before they are broken again.
No parent wants to admit it, but our daughter’s body is losing the battle against SMA. It’s not fair that so many beautiful babies and children have to live and die with SMA. However, we can continue to push back against this monster.
We have to.
We have to fight.
On May 9th 2015, Florence lost her courageous fight against SMA. She passed away peacefully in our arms at Canuck Place Children’s Hospice.
Currently, there is still no cure for the general public, but there are advances. We are getting so close.
Families like ours need as much support and love as you can muster. SMA is a life changing, life limiting disease. I know too many friends that have also lost their children to this disease.
Let’s fight back. All funds raised from the 10K will go to Families of SMA Canada.
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For a $50 adult/$25 youth registration fee, you’ll receive a graphic Tshirt designed by Shouting Love designs and BBQ, face painting, DJing fun. We’d love it if you would run, walk or roll around Stanely Park, in Vancouver, BC on AUGUST 7th at 10:00AM.
We are asking all participants to please try to obtain a minimum $100 in sponsorship from friends and family. Prizes will go to the winners of the 4K and 10K, as well as the top fundraisers.