Logan is almost 2 years old and lives with his mom, dad, and big brother, Landon. Like most other little boys his age, he loves trucks, music, reading books, and picking on his big brother. He is happy, joyful, very intelligent, and has a HUGE sense of humor! When he was just 6 months old, he was diagnosed with Spinal Muscular Atrophy type 1 (SMA). This makes his muscles very, very weak--he has never rolled over, stood up or walked, and he can only sit with assistance. When he was diagnosed, we were told that he only had a 10% chance of seeing his second birthday, but thanks to a brand new treatment and many miracles and answered prayers, Logan is slowly regaining some of his lost strength. He has a long journey ahead of him, but we are excited to say that he is just about 3 months away from that 2nd birthday, and we believe he has many, many more birthdays to look forward to!
What is SMA?
SMA is a debilitating genetic disease that essentially robs a child of all voluntary muscle movement. This includes the muscles required to move arms, legs, hold their head up, even the muscles to smile, eat and breathe. The heart and brain are never affected, and these kids are some of the happiest and most intelligent children you may ever meet. Before the recently approved treatment, SMA was the most common genetic killer of children under 2. ...We are excited to say that Logan and his other SMA buddies are paving the way to "the NEW SMA!"
A few months ago, Logan received his first powerchair and he has quickly learned to navigate his way throughout the house. He loves his newfound freedom and the ability to chase his big brother around the living room! Without his powerchair, he relies on us to carry or push him around, as he cannot sit, stand or walk on his own. He is no longer content just lying on his blanket and constantly hollers “up, up, up! Wheeeels!” so that we will pick him up and put him in his “wheels!” I never thought I’d be excited for my child to make messes, but the day that he is strong enough to open all the kitchen cabinets and pull all of the contents out on the floor, will be a day of victory in our household! As his mom, the gift of mobility and independence is one of the most beautiful things for me to witness and it is so exciting to see him experience this blessing of freedom.
However, this new blessing is also bringing to light some of the restrictions that are hindering him from experiencing this independence to his fullest. As of right now, our only means to transport his chair, is to use a hitch lift on the back of our car. What many people may not realize, is that if anything happens to his $30,000 powerchair while it's back there, it is not easily or fully covered by insurance (it wouldn't even cover half of the cost to replace it). We have only taken it outside of the house twice because of the risk involved with potentially getting rear ended, exposure to the elements, and the wear and tear that it puts on the powerchair (each time we have taken it out, we have to retighten bolts on the chair because of the rough ride from being suspended behind the car.) It's just too risky to take his chair out more often because if anything happens to it, he would lose every bit of this newfound independence in a heartbeat.
Safety is also becoming a concern, as the combination of his extremely fragile bones and little to no muscle tone, is making the transfers into his car seat increasingly difficult. With SMA, broken bones happen so easily—some kids have gotten them from simple diaper changes or the removal of a shirt. Each time that Logan is transferred to and from his car seat, is another chance that improper handling could cause an injury. The car seat itself also contributes its own set of concerns, as the lack of proper support is worsening the scoliosis in his back. With an accessible vehicle, Logan would be able to securely ride in his powerchair—it is specially designed to give him the proper positioning support, it would remove the risk involved in the transfers to and from his car seat, and it would allow him to enjoy the blessing of freedom and independence, that most all of us take for granted.
"WHERE THERE IS A WHEEL, THERE IS A WAY"
We know that our current method of transportation is not a long term option. We know that he deserves to experience the same joy of independence that so many other almost 2-year-olds get to enjoy...even if it involves wheels and a joystick. But unfortunately, we also know, that we cannot currently provide the solution to these problems. Logan needs an accessible van...and as much as it pains me to realize that Greg and I cannot financially afford to provide him with one on our own, it would pain me even more to know that I potentially let my pride stand in the way of him gaining the blessing of mobility that he so very much deserves.
When Logan was diagnosed, I had to quit my job to care for his needs. With only about 1/3 of the income we previously had now coming in, we've had to make some big adjustments and sacrifices just to make ends meet each month. Through the love and kindness of others, we've been able to pay the bills each month, but there is no money left over to put towards saving for a van or even towards a loan payment for one. We've done extensive research on these vans and it's heartbreaking to realize how expensive and out of reach they are with our finances. For a used, reliable van with around 60,000 miles, we are looking at a minimum of $25k-$30k, with the majority of them exceeding even that amount.
The weight of this need and the lack of our own resources has been a big cause of stress these past few months. It has not been easy to go from being financially independent, to being in a situation where you cannot provide for something your child needs for his own quality of life. ...So with great humility, faith, and prayers for guidance, we have come to the point of realizing that it is time to ask for help. God has blessed us with a loving, kind, and supportive family of friends that have helped us get this far, and with faith in Him and His people, we are asking for your help in providing Logan with this gift of independence, mobility, and freedom.
How YOU can help!
I have witnessed first-hand the ways in which God has provided in times of need over this past year--and friends, this is the biggest financial need yet. It’s truly a big one...one that has weighed my heart down for quite a while now. But I've seen Him move these big mountains before and I'm praying that He can help us move this one, as well. Your prayers, donations, love and encouragement on this mountain-moving-mission would be SOOOOOOO appreciated!! Every dollar gets Logan closer to experiencing all the world has to offer outside of these walls!! I can't thank you all enough for loving on our family as we continue to navigate this journey of faith that we have been placed on. We seriously could NOT do it without you! Thank you so much, and with your love and support, we will keep you all updated as we get closer to the big purchase date!
NOW, LET'S MOVE THIS MOUNTAIN!!!