Jason and Kelly’s daughter, Maggie Alexander, 6 years old, has a genetic disease called Spinal Muscular Atrophy (SMA) which requires her to spend her entire life in a wheelchair. Maggie was diagnosed when she was just 2 years old – knowing at that moment that she would never walk, never do many of the things that normal children get to do, her family and friends gathered together with the support of the community to face the challenges that would come. You can read more about Maggie in the posts I have previously written about her here.
♿ Before you continue reading – please pause for just a moment. If you are a parent or a grandparent, close your eyes and imagine your child or grandchild spending their lives in a wheelchair, unable to not only walk, but use any muscle from the waist down, and limited muscles above the waist. Imagine the things you do on a daily basis from the time you wake up until the time you go to bed – what you do for your children and even what they do for themselves – that is what parents of children with SMA do for them, but so so so much more because of their limited ability to help with regular daily activities of living.
Facebook Fundraiser for Maggie – https://www.facebook.com/donate/861536560859394/. Please consider donating – or at the very least – sharing out to your community! Can you spare $5 or 5 minutes (or more)? That’s all it takes to spread her message and get her the help that she needs!
👨👩👧👦 From the Alexander family:
At this point in our lives, we cannot go at this alone. If you have ever had experience with SMA or other similar conditions (physical or otherwise) you understand that it takes a community. We have put together a few reasons why we need to reach out to the community and ask for a little bit of your help.
🙏 Maggie keeps growing, just like every little one does, which requires her to move to a bigger chair, due to her body becoming more difficult to transfer from point A to point B. Which also means that her new, bigger, powerchair will not fit into our current van. Right now, when we have to transport her, she has to use her smaller chair which affects her spinal curvature because she does not fit in it well and cannot sit the way that she should in her chair. Not to mention, she is so uncomfortable when we have to do this.
🙏 We as parents love more than anything to have the ability to transport Maggie to any daily activities such as school, dance class, birthday parties, doctors’ appointments, and physical and occupational therapy – not to mention any kind of fun activity with friends or family she might want to attend. We’ve all had that moment as parents where our children are driving us crazy – we tell them to go outside and play, ride a bike, play basketball, run down the road to your friend’s house. While Maggie can still do most of these things, it takes a little more – and there is nothing more heartbreaking to a parent than to have to say no because transportation options just are not there.
🙏 Maggie deserves the right to experience the same qualities as other children such as having comfortability, having a sense of independence with minimal stress, and also never feeling like a burden. Most of us are aware of the physical limitations that would come with the inability to walk and being dependent on a wheelchair. Now imagine you’re a fierce and loving 6-year-old, with all the yearning to explore, touch, feel and discover your surroundings and the challenge Maggie and her family will face nurturing what would be non-obstacles for most children her age.
We know you don’t know us, and if you did, you would know that this is a very difficult thing for us to do, to ask for help. But we have no choice other than to pour our hearts and gratitude out to our friends, family and the community to help our family with any resources that you can provide to acquire a wheelchair converted van for Maggie.
We have no choice but to begin fundraising, and we need your help. Wheelchair converted vans, and used ones at that, are about the cost of 2-3 regular family vehicles. So, we are at a junction where we feel like reaching out to the community is the only real chance we have at making this a reality.
You can learn more about Maggie, her family, and her story here https://www.facebook.com/heroes4maggie/. Please reach out with any questions you might have.
Thank you all from the bottom of our hearts, please share with as many people as you can to reach a wide community!