Janea is a 15-year-old young lady who strives to do anything she can independently and tries to do what every teen girl her age would want to do. She is remarkable at so many different things and adapts well in many different settings. Janea shines bright to those around her, and she has become quite well known in this community. She has a few close friends including a boyfriend and a live-in cousin at home who support and care for her as she does her best to keep up with all the kids her age. However, Janea has a physical disability that most kids do not have to contend with, Arthrogryposis Multiplex Congenita. It is not a common diagnosis, and it limits her mobility and muscle development. She has had many surgeries and been to many different specialist and therapies. She has accepted the way she is and has chosen not to have any more surgeries any time soon. Cognitively she is age appropriate and quite mature for her age, but her physical challenges are substantial with basic, everyday needs. She knows what needs to be done and can kindly ask her family, friends, and caregivers to complete these tasks as she cannot do many things herself as she would want to. Janea overall strives to be like all the other kids her age and to be as independent as possible, but ultimately her safety depends on others as well as her ability to feel as normal as she can, knowing she is unique in her own way and faces many challenges on a daily basis. Just the feeling of inclusion means a great deal to her. She is an inspiration to many around her and is talented in areas that are unbelievable. She draws, paints, writes, and types with her mouth. She truly is special and deserves the very best of everything. Her spirit and sense of humor is incredible. Janea always looks for the good in everything and everyone. Her love for Jesus grows each day and inspires her to keep going no matter what obstacles she may face along the way. Janea say’s “God made her the way she is”, and she is okay with that! She is unstoppable and makes me as a mom feel encouraged and proud to keep doing the best I can to get her all the things in this life that she so very much deserves. Janea has the determination to do better and work through whatever comes her way and pushes me as her mom to do the same and to never give up. When it gets hard to see the light at the end of the tunnel, I just look at her, she is the light, and I know then it is worth every bit of the struggle.
We have been blessed with help from this organization about 4 years ago with assistance in getting an accessible van. It completely changed our world around for the better in more ways than one. It gave us a life outside of our home life. It helped to take the physical load of transitioning her in and out of her chair and into the vehicle to a minimum. It would not have been a possibility without the outpouring of help we had by so many people. Some we know and some we did not. We are extremely forever grateful for this as it was life changing. With getting that van it has allowed Janea and our family so much more freedom a lot of others may take for granted. Even the smallest things are usually a big deal for us and worth celebration. Even just a trip to the grocery store is so much easier. I love Help Hope Live because unlike some other nonprofit organizations they ensure the money is being used where it is intended to be. They cut checks directly to where it needs to go.
Janea’s s growth and physical limitations along the years have come with new challenges and obstacles for us all. She is growing into a young woman and needs more things. We have worked hard over the years to build and accessible home. Habitat for Humanity is helping us make this a reality for our family. Our home is almost complete. We have been doing all the things we can to make this home as accessible as possible for Janea now and into her future. The biggest item and the most important is her room and bathroom. She is getting a roll-in shower in our new home. There will be a track system in the ceiling to help us ensure her safety throughout her bedroom and will take her into her bathroom over the shower and toilet with minimal lifting. As she is a normal 15-year-old and almost always requires a team lift nowadays. With her limitations it does not allow her to help with lifting, and she is unable to hang on to you to help relieve some of her weight. She requires total assistance in all of her everyday needs, such as showering, toileting, dressing, eating, drinking, and much more.
We applied for a grant through an organization to help with the costs of her adaptable bathroom items, but unfortunately did not make the cut due to shortage of funds. With the shower and floor being the most expensive, we are reaching out to ask for any help towards the cost of her adaptable bathroom. The grant we were hoping to get would have covered up to $5,000 dollars of the almost $14,000 for just her shower area and floor. Anything and everything would be a blessing to us and greatly appreciated. This bathroom is being modified to specifically fit her needs and allow us that are caring for her the tools, equipment, and space that is needed to complete Janea’s everyday needs and tasks with a lot less struggle. It will also allow her, her own privacy as she deserves and give her the feeling of independency. This would help me as her mom and other caregivers the ability to have less physical strain put on us and make it more comfortable for Janea- After 15 years of holding and lifting on Janea, it has taken a toll on us both mentally, emotionally and physically.
Please consider this request for help towards the costs of Janea’s accessible bathroom as it plays a crucial role in our everyday lives. It will also provide Janea with more independent opportunities having this home built specifically around her needs. Thanks to Habitat for Humanity for helping us make all of this even possible and allowing us to make this build unique in order to accommodate Janea in all of the ways to make living a little easier. Something bigger to look forward to. Our home will be sold to us at the amount it cost to build it, so any help towards items in the home will be less that we have to pay over the next 30 years. We would appreciate any and all the help we can get. With a limited support system this would mean the world to us and help us start to live more fully. With your help and donations, we could improve Janea’s quality of life and be able to provide relief to her needs as they become more difficult.
Thank You,
Callie Scheibmeir
