Wheelchair Accessible Van for Zane
Donation protected
Zane is a beautiful, smart, funny, and loud little boy who was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was 5. DMD is a terminal, muscle deteriorating disease for which there is no cure. (For more information, visit parentprojectmd.org ) Not only will Zane never regain the muscle strength he has lost, but he will continue losing muscle strength as this disease progresses. As parents, we have to accept that the only fight we have is to keep him safe. Boys with Duchenne usually lose their ability to walk completely between the ages of 10-13 years old. Zane is entering the "transitional phase" of DMD a lot sooner than we thought he would. For his own safety and independence, we have to get him a powered wheel chair. Zane will rely on his chair for a majority of his day. Getting around our yard, following his brothers on walks and just getting around outside of the house. He will also depend on his chair for everyday activities such as grocery shopping, trips to the zoo, keeping up with friends at baseball games, getting across parking lots, and anything that requires a walk of any distance. The day that Zane will lose his ability to walk completely and become solely dependent on his wheel chair seems to be quickly approaching.
At this stage in DMD, his school days are exhausting. With the assistance of a stroller at school, we have been able to maintain Zane’s energy levels enough to complete the day. Before we implemented the stroller, Zane would fall asleep in the car on the short ride home and his legs would ache for the rest of the night. The stroller has been a blessing, but at the cost of much of his independence. He has to have a staff member with him at all times to push the stroller. Without it, a staff member has to be there to pick him up when he falls. He can no longer stand himself up from the floor. During an average school day Zane will fall at least 17 times. Something as minor as a friend walking past him and brushing his shoulder could send him to the ground.
Zane is having the most difficult time understanding why and how he is so different from his friends. On the outside he seems so carefree and energetic, but I see the embarrassment in his eyes every time he has to ask a teacher for help after falling in front of his friends. I can see the frustration as he watches his friends play and he can’t join in. At recess he spends most of his time alone as his friends run, jump, and climb on the recess equipment. His life is becoming more solitary and grounded with every passing day. The wheel chair will help him to keep up with his friends and have less adult supervision.
Aside from providing the independence and freedom that most kids his age are blessed with, it will also keep him safe from the everyday bumps and bruises. Zane is constantly in the nurses office for a banged up knee or face or head wound due to falling into a desk or chair. He can’t maneuver through children, desks, chairs, or other obstacles without the risk of falling. The most gut-wrenching calls to check on Zane aren’t even for the injuries. They are the ones where Zane’s emotions come crashing in because he doesn’t understand. He just wants me to hold him so he can cry, telling me that he only wants to go home. With the compact and easy to control power wheel chair, he will have the luxury of moving about the classroom and access his environment with little risk of injury.
Zane will require this chair for anywhere he goes for the rest of his life. This will require us to get a vehicle that will easily transport the chair as well as the rest of the family. This is also something that we have invested time in researching. A few years ago we purchased a van that we were told could easily be converted. Now we have been told that the van is a year too old. Still upside down on the van we have, we are forced to find a newer, more reliable van that will get us through many more years. More research. We are also reaching out to organizations that may help contribute to the costs of these vans. We welcome any referrals that you may have to offer.
My husband and I are always trying to plan ahead so that the future doesn't sneak up on us. However, we found out just how unpredictable the time table is with Duchenne the hard way when we purchased our home only 2 years ago. What seemed like a smart investment that we could flip in five or six years, is no longer practical for Zane. We are frantically trying to finish projects and put on the finishing touches while we are forced to start looking for a more Zane friendly house. More unexpected expenses. Already working two jobs, I would take on a third if there were more hours in the day. I’m already missing out on so much with my family because of the hours that I work, but I am trying so hard to provide us with what we need to make a better life, not just for Zane, but for our whole family.
(Make a Wish brought us to Disney World)
Many people have heard of the MDA and how they are the lifeline for Muscular Dystrophy patients like Zane. They have pointed us in all the right directions to make this transition, and more transitions to come, smooth and easy. They have been supporting and helping families for many years and were able to refer us to one of the best companies in our area that specialize in wheelchair accessible vehicles. Preliminary research shows that whether we pay out of pocket for the conversion to our old van, or buy a new one, our expected out of pocket expense is going to be around $50,000. Conversion mini vans are not cheap, talk about sticker shock! Our plan is to lower this amount by applying for assistance and trading in our current van. As we get the answers from this plan, we will revise our target amount. We will also continue to lower our target as we get any assistance and update everyone on our progress. We refuse to ask for more than what we need. We may be waiting some time for answers and results so for the time being, this is what we know to be our cost.
Our family will be extremely grateful for any donation amount. No amount is too small! We don't exactly have a time limit on our goal considering the amount we are seeking. We do know that Zane will receive his wheel chair towards the end of the summer, and that is when our need will increase. Aside from donations we are also asking for you to pray for Zane and to spread the word about DMD. We need doctors and researchers to be guided towards a cure. We also need the FDA to grant speedy approvals for promising treatments that may lead us one step closer to a cure. Time is not on our side, and it’s quickly slipping away from us. From the bottom of our hearts we thank you for anything you can give, whether it’s a dollar or a prayer.
For a little more information about our family and how the MDA supports Zane, click the video below.
At this stage in DMD, his school days are exhausting. With the assistance of a stroller at school, we have been able to maintain Zane’s energy levels enough to complete the day. Before we implemented the stroller, Zane would fall asleep in the car on the short ride home and his legs would ache for the rest of the night. The stroller has been a blessing, but at the cost of much of his independence. He has to have a staff member with him at all times to push the stroller. Without it, a staff member has to be there to pick him up when he falls. He can no longer stand himself up from the floor. During an average school day Zane will fall at least 17 times. Something as minor as a friend walking past him and brushing his shoulder could send him to the ground.
Zane is having the most difficult time understanding why and how he is so different from his friends. On the outside he seems so carefree and energetic, but I see the embarrassment in his eyes every time he has to ask a teacher for help after falling in front of his friends. I can see the frustration as he watches his friends play and he can’t join in. At recess he spends most of his time alone as his friends run, jump, and climb on the recess equipment. His life is becoming more solitary and grounded with every passing day. The wheel chair will help him to keep up with his friends and have less adult supervision.
Aside from providing the independence and freedom that most kids his age are blessed with, it will also keep him safe from the everyday bumps and bruises. Zane is constantly in the nurses office for a banged up knee or face or head wound due to falling into a desk or chair. He can’t maneuver through children, desks, chairs, or other obstacles without the risk of falling. The most gut-wrenching calls to check on Zane aren’t even for the injuries. They are the ones where Zane’s emotions come crashing in because he doesn’t understand. He just wants me to hold him so he can cry, telling me that he only wants to go home. With the compact and easy to control power wheel chair, he will have the luxury of moving about the classroom and access his environment with little risk of injury.
Zane will require this chair for anywhere he goes for the rest of his life. This will require us to get a vehicle that will easily transport the chair as well as the rest of the family. This is also something that we have invested time in researching. A few years ago we purchased a van that we were told could easily be converted. Now we have been told that the van is a year too old. Still upside down on the van we have, we are forced to find a newer, more reliable van that will get us through many more years. More research. We are also reaching out to organizations that may help contribute to the costs of these vans. We welcome any referrals that you may have to offer.
My husband and I are always trying to plan ahead so that the future doesn't sneak up on us. However, we found out just how unpredictable the time table is with Duchenne the hard way when we purchased our home only 2 years ago. What seemed like a smart investment that we could flip in five or six years, is no longer practical for Zane. We are frantically trying to finish projects and put on the finishing touches while we are forced to start looking for a more Zane friendly house. More unexpected expenses. Already working two jobs, I would take on a third if there were more hours in the day. I’m already missing out on so much with my family because of the hours that I work, but I am trying so hard to provide us with what we need to make a better life, not just for Zane, but for our whole family.
(Make a Wish brought us to Disney World)
Many people have heard of the MDA and how they are the lifeline for Muscular Dystrophy patients like Zane. They have pointed us in all the right directions to make this transition, and more transitions to come, smooth and easy. They have been supporting and helping families for many years and were able to refer us to one of the best companies in our area that specialize in wheelchair accessible vehicles. Preliminary research shows that whether we pay out of pocket for the conversion to our old van, or buy a new one, our expected out of pocket expense is going to be around $50,000. Conversion mini vans are not cheap, talk about sticker shock! Our plan is to lower this amount by applying for assistance and trading in our current van. As we get the answers from this plan, we will revise our target amount. We will also continue to lower our target as we get any assistance and update everyone on our progress. We refuse to ask for more than what we need. We may be waiting some time for answers and results so for the time being, this is what we know to be our cost.
Our family will be extremely grateful for any donation amount. No amount is too small! We don't exactly have a time limit on our goal considering the amount we are seeking. We do know that Zane will receive his wheel chair towards the end of the summer, and that is when our need will increase. Aside from donations we are also asking for you to pray for Zane and to spread the word about DMD. We need doctors and researchers to be guided towards a cure. We also need the FDA to grant speedy approvals for promising treatments that may lead us one step closer to a cure. Time is not on our side, and it’s quickly slipping away from us. From the bottom of our hearts we thank you for anything you can give, whether it’s a dollar or a prayer.
For a little more information about our family and how the MDA supports Zane, click the video below.Organizer
Kara Jacobs
Organizer
Eudora, KS
