I first met Nici on Facebook. She was the winner of a free breastfeeding mini session during giveaway month. I knew from the start that this session was going to tug at my heart strings, and more. She told me that she doesn't technically breastfeed, but her son, Wade, is fed breast milk via feeding tube. Just from reading those few words, I knew Wade and his parents had been through a tremendous amount in such a short amount of time. So, I decided this session needed to be more than just a mini session. We scheduled a lifestyle session at their home, and this is what I learned:
Wade, who will be 2 years this October, has Spinal Muscular Atrophy Type 1. SMA is a rare disease that diminishes physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. Nici and her husband, Ryan, were told there was a 90% chance Wade may not make it to his 2nd birthday, but they have remained strong and optimistic. Wade is almost two, and his little tooth filled grin and beautiful, long red hair will melt your heart!
THEIR STORY
Nici and Ryan decided their first born son, Thor (now 4 years old) needed a sibling. So, they planned to get pregnant. Nici found out she was pregnant with Wade at 5am one day, and woke her husband up with much excitement! This actually reminded me of when I found out I was pregnant, so I really related to her joy here! The pregnancy was basically normal; well, as “normal” as you would call any pregnancy! Nici did notice that Wade didn't move around as much during the last month, but thought nothing of it at the time. I mean hey, it’s pretty cramped in there, right? They found out later that low movement is actually a symptom of SMA. Nici gave birth to Wade on October 25th, 2013, which was his due date. There were no complications during the birth, and he was born healthy and happy.
Around 2 months of age, Wade’s parents noticed he wasn’t hitting the milestone’s as quickly as he should. He could not lift his head or bear weight on his legs. They expressed their concerns to his pediatrician at his 2 month old check-up, but were told it could be nothing and to wait until his 4 month check up. At 4 months, Wade was still not hitting these simple milestones. Nici & Ryan were becoming increasingly concerned. At his check up, the doctor thought maybe Wade could have Hypertonia, which, simply put, is an increased tightness of muscle tone and decreased ability to stretch muscles. But this did not seem to fit. Wade was starting to exhibit other symptoms, such as a distended belly, a sunken-in chest, he held his arms outwards, and his laugh was very quiet and muffled. A couple days after that appointment, Nici and Ryan decided to go back to the doctor for more answers.
The pediatrician sent Wade for a PT evaluation. At that appointment, the doctor agreed that something was going on with Wade, and that he should see a neurologist. The neurologist examined Wade and performed some testing. After a little time went by, around 6 months of age, a blood test confirmed Nici & Ryan’s fear, Wade has Spinal Muscular Atrophy Type 1. Of course they were both devastated, but they decided they would do everything in their power to help their son live as happily and healthy as possible.
Wade has quite a few machines that help him on a day to day basis. At this point, he has only 10% lung capacity. Wade is on a BiPAP machine overnight to help him breath properly, he has an SPO2 monitor on him at all time to assure is oxygen levels are in the right range, he receives breathing treatments a couple times a day, a cough assist machine to help him cough up any material remaining in his lungs, and he receives his food via a gastrostomy tube (feeding tube) because he cannot properly swallow his food. Wade also has a night nurse that watches over him while he sleeps overnight. When Nici and I were talking, she told me if they were had chosen not to give Wade any of these treatments, he most likely wouldn’t have made it past 6 months of age. Wade must lay flat with his head to the side at all times, because he may choke if he doesn’t. Wade also does not have much movement left in his arms and legs. Nici and Ryan cannot hold their son like most parents. When I found this out my heart broke for them. Nici told me this was very hard on her at first, but she knows it must be done and she remains strong for her son.
Meeting their family was great. You can really see the love between them all, and the tight bond they have. Ryan and Wade definitely have that hilarious father and son bond you see with any other family. At one point, I asked Ryan to kiss Wade on the cheek for a photo, and he chose to chew on it instead. Thats love right there! :-) They are just like any other family, but they have also been through so much more than most. They have found the strength to overcome all the challenges that are thrown their way. Their story is such an encouraging one. The lesson? Live life to the fullest, love your families, fight like hell and enjoy some laughs!
(Tip: Viewing blog posts from different computers and phones may make these photos seem blurry. If you click on them, they will become larger and come into focus. You're welcome!)
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| When I first walked in to meet Wade, he was still attached to his BiPAP machine and had just woken up. Nici had told me Wade doesn't always like strangers, because a lot of them are poking at him. He seemed to like me though! ;-) |
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| Getting dressed and receiving his first breathing treatment of the day. |
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| When Wade is receiving a breathing treatment, Mom or Dad needs to pat him on the chest or back. This helps loosen up any mucous in his lungs, which will later be suctioned out once it reaches his mouth. The SP02 reader remains on his toe at all times. |
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Wade's room doubles as a hospital room. He has many machines as well as a large set of bins that holds all of the medical supplies Nici & Ryan use for Wade's care.
After his breathing treatment, his Mom suctions out mucous from his mouth that has come up during the treatment. |
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| After his breathing treatment, they use a cough assist machine to simulate a cough; since Wade does not have enough lung capacity to cough on his own, this helps bring up whatever is left in his lungs. After that his mouth is suctioned again, which he doesn't really seem to enjoy. But that's nothing a little love from Mom can't fix! :-) |
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| Wade has a special stroller he uses to keep him laying flat. Transferring him to the stroller can be a little challenging, as they do not want to tangle up the chords from his SP02 machine and his feeding tube. But he doesn't seem to mind! Look at that smile... |
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| Mr. Thor was pretty happy to meet me and my giant camera! He gave me quite a few smiles and poses. |
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| Brotherly love... <3 |
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| Thor loves his little brother! |
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These strands of beads are called Beads of Courage. Each bead stands for something different. The yellows are for each night Wade has stayed in the hospital, blacks are for blood draws, rainbows are respiratory treatments, hearts are for hospital transfers; all of the beads stand for something that has happened while at the hospital.
Beads Of Courage |
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| Handsome boy! |
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| Mommy & Daddy with Wade. Dad thinks Wade tastes yummy... ;-) |
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| Nici is still able to provide breast milk for Wade. She pumps, and he watches his shows. Not a bad deal, Wade! He also has an eye gazing device where he can choose apps and shows with just the use of his eyes. Pretty awesome, right? |
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| This is Wade's gastrostomy tube (feeding tube). Nici mixed together his food, which consisted of breast milk and juice this time, and hooked it up to Wade. |
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| Dinner and a show! Ok, it was lunch time, but you can beat having lunch in front of the TV. |
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| Just sweet... |
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| Proud parents! <3 |
Nici and Ryan keep in close contact with many other SMA families online, and keep themselves educated about the disease and treatments. They also really enjoy raising awareness for SMA. There is no cure for SMA. 1 in 6-10K children are born with SMA in the US. More than 60 kids this year have passed away from the disease. Most kids diagnosed with SMA have likely inherited it from his/her parents. There is no cure, but they are discovering more about the disease every day. To donate to SMA research, visit CureSMA.org. To be a “Warrior 4 Wade”, follow his page on Facebook! Nici and Ryan are also in the process of raising funds for a van that can provide easier transport for Wade and his medical machines. If you would like to donate, please click here.
