12 yr old Ellijah Needs a Van

         My 12 year old nephew Ellijah is an amazing, bright, curious to the world, kind spirited soul. He loves Science, History and  Super Heroes. He is a regular kid but life delt him a difficult curve.  When he was young my sister Maria and family noticed he had a hard time running and was slower getting up then other children. 
     At age 3 my nephew was diagnosed with Duchenne Muscular Dystrophy. According to Web MD, Muscular dystrophy are a group of diseases that make muscles weaker and less flexible over time. Duchenne muscular dystrophy (DMD) is the most common type. It’s caused by flaws in the gene that controls how the body keeps muscles healthy. Children with DMD have a hard time standing up, walking, and climbing stairs. Many eventually need wheelchairs to get around. They can also have heart and lung problems. When Ellijah was diagnosed the doctors gave my sister and our family a timeline that it would be a miracle if he made it past 18.
           This devastating diagnosis changed our family forever. Thinking that my family would crumble and not being able to handle such fate, I was wrong. Of all people my sister has been so brave and amazing. Since day one she has had the mentality that she would take one day at a time and wouldn't treat him any differently. Year after year he has been treated as such. With the strength of his parents and his younger brother he has been able to experience many amazing family moments and capture so many memories even though his body is slowly deteriorating.
         Now he is 12 years old and his disease is becoming very real and the struggles are everywhere. This little independent curious boy has become a very mature young man who relies on his family for everything from getting dressed to bathing him and even putting him into bed. For many people this loss of independence would probably make them lose faith in themselves. Not Ellijah. He is so strong and brave that he doesn't let his disability overcome him. He continues to have hobbies and is top of his class in school.
        Even though his body is slowly falling apart and all his muscles will fail him my sister has been his rock. She purchased a van large enough to fit the family and his wheelchair. Before it was difficult because that van is not wheelchair accessible. She was not able to purchase a fully loaded wheelchair van because the cost was way too much. So she did what she could and she dealt with what she was given. This is where the struggle became unbearable. My sister and her husband would have to constantly physically hold him up and lift him in and out of the van and put him in and out of his wheelchair. The strain of lifting him (100 lbs) several times a day is more than a  person can handle. If she or her husband hurt their backs it would be impossible to take care of him. 
           Of course the rest of the family that is not near them are always worried but we stay in touch and always visit frequently. We felt some at ease that Ellijah's community, school, and larger organizations or state programs would assist Ellijah with this difficult time. We were wrong. Yes some have helped such as his local Norwich, CT Fire Department and his school as well as friends and families, extremely grateful but its not enough. They need more help.     My sister desperately needs a new wheelchair van. We thought that it was possible to get her old van modified. Unfortunately, her van has too many miles on it to alter it whitin saftey standards. Also the van she has now is a lease and because of all Ellijahs trips to various doctor appointments to Yale and other appointments her van has gone way over the lease miles limits and she needs to pay off any fees and has to buy the van in full by Jan of 2016 which is over 16,000.00. Since she does not have that kind of money she has to get a personal loan to pay off this van that is now useless for Ellijah.
       Our family has searched for an accommodating new and/or preowned wheelchair equipped van and all of the estimates run between $45,000.00 to $50,000.00. Plus with the pay off of 16,000.00 (hopefully can trade it in) clearly the cost is outrageous!
Also on another note, my sister needs her bathroom to be remodeled. The bathroom is extremely small and it is too narrow. Ellijah cannot put his wheelchair all the way in so my sister and her husband again has to lift him from his chair onto the bench for a shower or the toilet and then lift and carry him back onto his wheelchair. They also need to install a Hoyer Lift from the ceiling to move him from the wheelchair to bathe him. The bathroom is going to be aproximately 13,000.00 all told with permites, labor, parts and converting a tub into a wheelcair stand up shower.
     I am hoping that everyone will read his story and help my sister and Ellijah out. They live in Norwich, CT but I live in Keene NH. I wish that I could be in Norwich more to help my sister and Ellijah but I cannot because of my job and raising my own family. My sister is incredibly strong and independent and would never ask for help but she is overwhelmed in every way.  I tried my best to ease her needs by creating a non profit organization "Panda's Project" where I would create collages either electronically or by hand from old pictures and 100% of any money that I made would go to Ellijah for buying a new van. I also tried to create tshirts and tried to sell them. People like my idea and wanted shirts but I didn't have enough sales to even consider it a success. I have not given up on Panda's Project but my sister needs help and she needs help now. 
         I can't keep seeing Ellijah being lifted in and out of wheelchair anymore. The look of terror of falling when he is being carried in and out of his chair haunts me and breaks my heart- breaks all our hearts. No child who is permanently confined to a wheelchair should ever feel afraid and uncomfortable in anyway. None of us can cure him but I can make it my mission to keep trying to find ways to make Ellijah safe and happy even if I am in NH. I truly believe in the power of help and support from all people and I believe in miracles...We just need help getting there. Maria please stay strong! We are here for you. Don't lose faith in humanity!  Auntie Mandy loves you Ellijah! We all do! This is for you buddy!