P. O. Box 227, Great Falls MT 59403
Jacey's Journey was created to help families with SMA, with information, equipment and supplies. We started our personal journey in October 2011. Jacey was 6 months old and diagnosed with SMA type 1. Jacey was born in march 2011 and met all milestones until 4 months of age. We then saw a decline in her physical abilities and eating habits. She was once able to sit in her chair unsupported and then began to slouch and was unable to hold her head straight. We were told we "spoiled" her and needed to allow her to do things herself. We knew in our hearts this was not the case and something was seriously wrong. We searched and researched and were finally sent to see a neurologist who at first glance knew exactly what was wrong. With a saddened face he said those three dreaded letters...SMA. we had no idea what it all meant. After more research, we all mourned the loss of what we had anticipated as a healthy childhood for Jacey. Her health quickly declined and she was hospitalized twice in the next month. During this time, we reached out for information or people we could learn from.
Now, four years later, Jacey is amazingly healthy, strong and unimaginably smart. We want to give back, pay it forward or anything we can to thank everyone who helped us, lead us, supported us, prayed with and for us and thank God for giving us the strength, faith and knowledge to keep our little angel strong.
I follow many families on Facebook as they too, fight with all their might against this disease. My push to start this page and organization was the loss of a beautiful little girl. One day she was celebrating her second birthday and two days later her parents were saying good-bye. God had called her home. Too many babies, too many angels, too soon. Many parents know what they should do, but are unable to get the equipment they need. Many families need help or advise and don't know where or who to ask. We are not experts by a long shot, but we are resourceful. We will do the best we can to help anyone we can.