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Jacey's Journey

Posted on April 17 2015

Jacey's Journey
Jacey is her name. She is a little princess to start off. She is amazingly smart with a beautiful heart (and face like all princesses do). She was born March 15th 2011. She was smart and a perfect child. When she was 6 months old she was sent to the hospital for dehydration, for a couple weeks before hand they knew something was happening with her. Jacey was getting "lazy bones".. In the hospital they looked at her parents and said we can't help her here.. That morning she was flown all the way to Spokane via mercy plane. When Jacey arrived to the children's hospital They had already rushed the results of her genetic testing.. She was official diagnosed with Spinal Muscular atrophy (SMA). SMA is a genetic disease that causes the muscles controlled by the spinal cord to get weaker when used instead of get stronger like a ordinary persons would. The doctors told her family to say their good byes. She would NEVER make it to her first birthday and if she did there was no way she would see her second. Her mother and father said no. She will. Little Jacey had pneumonia and a completely collapsed lung. Little fact about SMA pneumonia, collapsed lung(s), and RSV are usually the main reasons these babies pass a way. But her parents did research and figured out what she needed to get out of the "yuck" she was in. They fought doctors and nurses (they were trying to help but they no clue what SMA was so they were unintentionally hurting her). They stayed awake for weeks (yes, weeks she was they for a month and a half) straight until finally the doctors said Jacey was healthy enough to leave the hospital. So Jacey's parents made the long drive from Spokane to Montana (which cell phone reception is almost nonexistent along that way). When they got home (after only ONE "crash" the whole way) they realized they had nothing at their house to keep Jacey healthy. So her family celebrated thanksgiving and her dad and me (the older sister) hit the road with Jacey to Salt Lake City. They had just planned on a doctors visit with a leading doctor on SMA and staying there for 3 days to get her a bipap (A machine that will help her breathe but make it easier for her so she wasn't tiring herself by just breathing). The night we got there we got a hotel room so the next morning we could go meet the doctor. Jacey was healthy at this point. There was no "crashes" (crashes as in her oxygen levels didn't drop below 92). When we arrived at her doctors appointment her doctor got very worried.. Jacey wasn't as healthy as we thought. She was on the verge of another collapsed lung. She was rushed up to the PICU. They gave her a bipap.. and kept her there for almost another month. In and out of the PICU. We got home just in time for Christmas. Jacey's parents never lost hope for her. They converted most of their house just for her. Their kitchen turned into a tub area for her and the dining area turned into a treatment center. Slowly, over months, more and more medical equipment was added until they had a whole hospital into their kitchen. And against the odds, Jacey celebrated her first birthday. And she was healthy as can be. Her muscles were another story. She laid still with almost no movement other then her forced belly breathing. Our father was getting heart broken, more and more everyday. He finally had enough and made this horribly awkward contraption to take the weight off of her arm. His "zero gravity device" was their first prototype. He set it up and showed Jacey she can move her arm more easily. First thing that little princess did was swing her thumb into her mouth.. It broke her families heart. This whole time they never realized she wasn't able to do "baby" things like suck a thumb. Jacey's father headed back out to the garage to make a new one that would be more "productive" and sturdy. Every time he finished one someone in the family had a better way to make it better. Jacey's mother posted a video of Jacey using her "zero gravity device" and other SMA parents started to ask where they found this "arm device". The parents showed the other parents how to make it and none could do it. At this point Jacey's mother set up "Jacey's Journey" to help give nutritional advice to other families. One of the other SMA parents decided that Jacey's parents needed to make this "arm device" for his daughter. He told Jacey's parents to make as many as they could for kids all over the world with SMA. Melissa and Allan (Jacey's parents) decided to take his advice. They officially named the arm device an "angel arm". And very quickly they had orders from all over the world coming in. When Jacey was about to turn two she got very sick. She had RSV, pneumonia, and bi-lateral collapsed lungs. She crashed when her bipap was removed, she needed oxygen constantly. This time her parents were prepared. They were even able to celebrate with a birthday party. And during her birthday party Jacey wanted off of her bipap. And she was able to tolerate to breathe on her own again. She had beat EVERY odd against her. Melissa and Allan were convinced she was going to do everything they were told Jacey would never do. She would go to school, she will sit up, she will run and dance, she will be valedictorian when she graduates high school, she will be walked down the isle on her wedding day. (recently they have been able to get her in to a chair and a stander, to take her to school (Monday thru Friday), she is learning to talk and sign, and she has a "boyfriend" or two depending on the day). Melissa quit her full time job to stay at home and run her non-profit and be a nurse for Jacey. Jacey has battled RSV twice since her second birthday (usually around her birthday) and every time she has battled it, once she kicks it in the butt, she is stronger than before. No one in the family thinks or acts like she is handicapped. This is because she is not. She even knows it, she just has lazy bones. Jacey is now 4 years old (and just as sassy as any other four year old princess). Jacey has a brother named Kendrick, a sister named Brittany, a brother in law named Steven, and her best friend and nephew named Christopher. Jacey has two pet ducks, Cora and Rae, a pet rabbit, Honey, and two dogs, Manny and Zoey. And a little bit to know about Jacey's Journey. Jacey's Journey has made more than 100 arm devices for children with muscular diseases and helped "too many to count" children with their diets. The non profit only charges for the cost of material for the "angel arms", Sambucous kits, and shipping. We have held one real fundraiser (to put a patent on the angel arms). Money that has been put in to Jacey's Journey is from donations, or online "events" (a.e. t-shirt sales). Every single person who helps by making the angel arms (or writing a long story online) is doing it for free. To help spread awareness. To help a child gain mobility. To help lost parents realize diagnosis is not the end. To show the world that take the bad in a scenario, hug it, and see all the new things that life has to offer. Now that you see that not all bad news is bad, let me tell you something. Spinal Muscular Atrophy is a genetic disease, 1 in 45 people are carriers. If two carriers have a child together that child has a 25% chance of being disease free, a 50% chance of being a carrier like its parents, and a 25% chance that that child will be told it won't see his or hers second birthday. But trust me don't believe its true. Not one bit. There is multiple types of SMA. SMA type 0 doesn't (usually) make it to birth and are unable to breathe on their own. SMA type 1 diagnosed at 0 to six months of age (like Jacey) are said to not see their second birthday and are unable to sit up straight. SMA type 2 will be diagnosed from around 6 months old and up to 18 months, they will loose ability to stand. SMA type 3 is diagnosed around 18 months to 3 years old their life expectancy is in their adult years and have just weakened muscles. SMA type 4 is diagnosed in the adult years and is not as likely to affect their life expectancy. Now that I've hit you with my family's story... do you know if you're a carrier?
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