I can already tell you this will be a long blog post as this one is about an incredibly brave family. I encourage you to please read this blog post, fully. It may be a little heart wrenching but stick with it – You’ll be glad that you did
This session was like no other Al Weddings has ever done. We were presented with this special opportunity to take one year old pictures for a very special little girl. Cadence is one of the few babies diagnosed with Spinal Muscular Atrophy (SMA) each year. Only 1 out 6,000 babies are diagnosed with this horrible disease. Cadence was diagnosed with the 2nd worst form of this disease, type 1. This particular type of SMA leaves Cadence almost motionless. She can make very small movements of her hands and legs but most of them are involuntary.
When Nikki, mother of Cadence, contacted us to describe the situation and asked us to take the pictures. It was very touching to be the one she chose to capture this special moment. These pictures were more than just one year old pictures. They were (to me) commemorating an achievement because most of babies with type 1 SMA usually don’t make it to their first birthday.
The day before the session we were told that Cadence was going to have to be on her bipap machine for the session because of her not feeling well. But within a few minutes of doing the shoot you could tell Cadence was having a blast and we were able to remove the mask for almost the full session. Even though Cadence is almost motionless and is very quiet you could just see the excitement in her eyes.
To be honest this brought tears to my eyes. Cadence and her parents are all very special and strong people. A special girl requires a special blog, so before I show you all the pictures, I asked Nikki to write a little bit about their story.
“Miss Cadence Jade was born November 19th, 2012. She seemed to be a healthy, happy little girl. She became sick with a little cold around 6 weeks old, I took her to her pediatrician whom sent us straight to Children’s Hospital. He didn’t just notice Cadences cold, he noticed her weak cry, belly breathing, lack of movement, and no normal reflexes. We spent a week at the hospital while they ran several tests. All coming back negative. They had Genetics come over to us, who introduced us to the horrible letters of SMA. They rushed the test and on January 15 we received positive results that our little princess had spinal muscular atrophy (SMA).Spinal Muscular Atrophy (SMA) is a genetic disorder that robs children of their ability to breath, swallow, move, and smile. Children are also given a life span of only TWO years.
To this day there is no cure, BUT they are very close!
We spent a total of a month and a half in the hospital. This time was spent by Cadence getting over her cold and it gave her father and I time to learn how to care for our special little girl. Cadence was sent home with her own hospital room. A bipap machine, suction machine, cough assist machine, oximeter, sleep apnea machine, nebulizer and a feeding machine (she was NG. tube fed). We learned things we never thought we would have to know and words we never thought we would ever have to use on a daily basis.
On February 15th we left what was now going to be our second home to go to our actual house. Over the next ten months we fell into our new normal. Our house became a hospital. We realized that we couldn’t just pack a diaper bag and take cadence out. All her machines had to go with her. Life that we thought was hard seemed so easy. We spent two more stays in the hospital over that period of time. Not long stays maybe a week or two. Cadence had one mucus plug, which are the scary things that can block her air ways and take her from us. We overcame our first and only one so far! Something that I wish I could never see, my sweet little princess pale and gray looking at me helpless. We coughed and suctioned and coughed and suctioned until her color came back. We went to the hospital to make sure she was okay and we got released a couple days later. We have been able to keep her healthy and strong!
Her one year birthday was a big accomplishment. Only 20% of kids with SMA – Type One live past their first Birthday! And in that one year she has touched more lives than I ever will in my lifetime. Looking at her my whole perspective of life has changed. We live for the day. We don’t make plans for the future because we know the future is not promised. But every day we have with her is worth a lifetime of happiness for us! I’m glad I can share my princess with all of you and hope she brings a smile to your faces every day!
Thank you Sara and Alex for coming to our house and taking these photos. You allowed her to be in her own comfortable environment and made her feel comforted. You allowed us to see her face without her mask for over an hour which is something that hasn’t happened in months. For capturing these moments in a photo that we cannot just remember but look at and cherish every day!”
