Janae is a 10 year old, beautiful young lady who wants what every other girl her age wants.
I am partial, as I am her mother, but it is very evident that she has something extra. Janae shines bright to those around her, and she has become quite well known in this community. She has many friends who support and care for her as she does her best to keep up with all the children in her age group. However, Janae has a physical disability that most children do not have to contend with, Arthrogryposis Multiplex Congenita. It is not a common diagnosis and it limits her mobility and muscle development. Cognitively she is age appropriate, but her physical challenges are substantial with basic, everyday needs. She knows what she needs done and can kindly tell you as well but cannot do many things herself as she would want. She strives to be “like other kids” and be as independent as possible, but ultimately her safety depends on others.
Janae has an incredible sense of humor. She is almost always positive, happy, and very upbeat. Her smile alone can brighten anyone’s day. She has an infectious personality. We have always told her that God has chosen her to have disabilities to help reach out and to show others who may have lost sight of how blessed they are, and to always be accepting of others. We have done our best to help instill in her to be thankful for what she has and, even as physically limited as she is, there is always someone who wishes they had as much as she does. Because of her dedication, spirit, and hard work, she has the ability to adapt to new things time and time again. Having to relearn or adjust after a surgery can be frustrating and often times overwhelming, but she pushes through and finds a way. She has the determination to do better and work through whatever comes along. She does this by maintaining a positive attitude and outlook. She receives a variety of therapies from wonderful therapists who go above and beyond to help her achieve new things. Even the smallest things are usually a big deal for us and worth celebration.
Along with that feeling of wanting to be like other children comes the feeling of wanting to be included. However, most of the time, Janae has a feeling that she is left out or excluded from activities because of her limited mobility or accessibility. It is not an easy task getting Janae to places because of the lack of proper equipment, namely an accessible van. As Janae grows, the physical strain it puts on me is substantial, and it severely limits where we can go and what we can do. Even a simple run to the store for a few items or going out to eat presents a large task and sometimes it feels impossible to be able to do that with her. Every outing takes a physical toll, not only with picking up Janae but her wheelchair as well. We have the desire to go out and experience life as best as we can, but these challenges become evident every time we try.
It starts with the challenge of transitioning Janae from her wheelchair and into the vehicle. I often must do this alone and it becomes more challenging every day. With my current vehicle setup, I must hook up a trailer to transport Janae’s wheelchair. One of the things I worry most about when traveling is that due to her size and shape, I have difficulty getting her safely placed and properly restrained in my vehicle. The need of an accessible van is with us every day. An accessible van would give me piece of mind knowing that when we travel to large cities to see her specialists that if something were to happen, she would be as safe as possible. Also, having an accessible van would allow us to be able to do more things, go more places, and attend community events without the hassle of connecting a work trailer and wondering where we can get a suitable place to park.
The addition of an accessible van to our lives would mean so much to us, and to Janae’s wish to be more a part of everything and feel included. It would relieve many obstacles for me, and I know it would be life changing and greatly appreciated. It would help knowing that when staff are with my daughter at home, they would have safe transportation in case of emergencies. This accessible van would not only help physically, but mentally and emotionally as well. She would be safe inside the vehicle. We wouldn’t have to worry about how my body feels or what the weather is going to be like. We could have a girl’s day out, enjoy a meal together without it being such a difficult task or chore. Janae already feels like she is too much of a hassle or burden sometimes, having to depend on someone all the time. Having an accessible van would take so much stress and worry away for both of us.
Please consider this request for help with an accessible van, and all the benefits it would mean for our family. Safety is our main priority, but the opportunity for inclusion means so much as well. This would help Janae’s mindset with being more a part of available activities, and the easier transportation would help her feel like less of a burden. We wouldn’t be tied down to just school, home, and doctors all the time. This would allow Janae to feel as normal as she can with all that she has been given. Thank you again for this consideration of helping our family reach our goal of buying an accessible van, so that we can grow our chances to start living more fully. Being a single mom with a special needs child and three extra kids I have guardianship of is challenging to keep up with at times. I have a very limited support system and this would mean the world to us. With your help and donations we could improve Janae’s quality of life and be able to provide relief to her needs as they become more difficult.
Family and friends of Janae Maggard are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Janae has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
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In honor of Janae P Maggard
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087