Sweet William's Way

$35,310 of $50,000 goal

Raised by 364 people in 40 months
Updated July 17, 2017

As you all know, I will be starting teaching again this Fall as an elementary teacher, something I'm excited about but also terrified about leaving William. I would stay with him in a heartbeat, but our life has taken off in different directions lately and left us needing some financial assistance.

Also if you have been following, William has two acute (happened recently) fractures in his left leg/hip. Although we don't know the incident that caused this, we are fairly certain that him standing in his stander had something to do with it. They tell us to put him in his stander to help his bone health, then we do, then because he doesn't walk on his own, his bones are weak and can break when standing. As parents, we now have to decide the lesser of the two evils: risk him breaking again but giving him the best chance at weight-bearing, or not put him in the stander and be very very careful every time he is transfered as his bones become more and more brittle.

He is also getting bigger, fast. And that may have something to do with the break as well. His bones are stretching and they aren't the strongest to begin with.

It's very scary. My mind does circles over and over in my head on how to give him the best most comfortable life possible without wrapping him in bubble wrap and keeping him away from anything fun and exciting.

Obviously, we are still sending him to school in the Fall because its just a few hours a day, we don't have to go every day if he's sick, and he NEEDS to be around children. You should see his eyes light up when he's in the classroom. It just pulls on the heart strings. This kid was made for greatness and we have to keep going forward doing the best we can for physical health, but also mental and spiritual health.

Okay, so what I'm getting at:
1)William needs a track lift system to get him from his bathtub to his bedroom. I will attach a picture below so you know what we are looking for. Insurance doesn't cover those type of lifts, but do cover Hoyer lifts, which we will hopefully have for the rest of the house as it is open-concept and one floor. But, the Hoyer lift does not fit into his small bathroom. We found a gently used on at Habitat for Humanity on Sale for $4500, so we need to act quickly on this as their off the shelf cost runs about $15,000.

2)Obviously with William's new breaks, we know how every thing from moving, to therapy, to every move will have to be careful and well thoughtout. Improper lifting, carrying, sitting, standing, etc, will cause additional broken bones. Fortunately, we know there are not any "old" breaks, that we missed based on his scan, but what we know now is that he was osteopenia, a step before osteoporosis, despite everything we know how to do. The BEST THERAPY for him now is aquatic therapy, you can weight bear (stand) but not at 100%, its easier on his bones, it relaxes his muscles, and we have seen just how 30 minutes a week can help him start kicking his legs and taking his first steps! So now Robert and I know 30 minutes a week isn't enough, and we have to drive 60 minutes round trip to get there, transfer him into the car, out of the car, out of his clothes (which believe it or not can be very very difficult when they can't riase their arms, more risk for a break), transfer into the pool, out of the pool, back into his clothes, into his wheelchair, into the carseat, out of the carseat, and back into the house. Whew. So, there are a lot of chances for injuries with all of the transferring. He needs water therapy available at our home so we don't have worry about transferring anywhere, its in the comfort of his own home, and we can do it as much as we want to with him. We don't need anything fancy as it will be inside, and we have priced them. A 2-3 person, least expensive jets, no fancy lighting etc etc, runs $3700 (I'm including delivery and setup in that price). We have done extensive searching online, and there is a cheaper one at WayFair, but it doesn't include setup. Picture below. I have exhausted any and all grants for one of these, with no avail so if you know of one please let me know!

3) We got an estimate from a contractor for an ADA accessible ramp to our house from our driveway, so we can eliminate carrying him up the stairs and risk falling. That estimate is $4,975. Our insurance will not cover this ramp. I don't have a picture for this as it would be custom to our home. But the estimate is from the ADA contractor (he modifies homes based on the American Disabilities Act guidelines) and he estimated $4975.00.

GRAND TOTAL NEEDED FOR WILLIAM'S EQUIPMENT: $13,200

We really appreciate all you do for us and I hope you know how grateful we are! He's getting big fast and moving him is becoming dangerous without support.
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WILLIAM UPDATE (AKA SUPERMAN):

As you all know, I will be starting teaching again this Fall as an elementary teacher, something I'm excited about but also terrified about leaving William. I would stay with him in a heartbeat, but our life has taken off in different directions lately and left us needing some financial assistance.

Also if you have been following, William has two acute (happened recently) fractures in his left leg/hip. Although we don't know the incident that caused this, we are fairly certain that him standing in his stander had something to do with it. They tell us to put him in his stander to help his bone health, then we do, then because he doesn't walk on his own, his bones are weak and can break when standing. As parents, we now have to decide the lesser of the two evils: risk him breaking again but giving him the best chance at weight-bearing, or not put him in the stander and be very very careful every time he is transfered as his bones become more and more brittle.

He is also getting bigger, fast. And that may have something to do with the break as well. His bones are stretching and they aren't the strongest to begin with.

It's very scary. My mind does circles over and over in my head on how to give him the best most comfortable life possible without wrapping him in bubble wrap and keeping him away from anything fun and exciting.

Obviously, we are still sending him to school in the Fall because its just a few hours a day, we don't have to go every day if he's sick, and he NEEDS to be around children. You should see his eyes light up when he's in the classroom. It just pulls on the heart strings. This kid was made for greatness and we have to keep going forward doing the best we can for physical health, but also mental and spiritual health.

Okay, so what I'm getting at:
1)William needs a track lift system to get him from his bathtub to his bedroom. I will attach a picture below so you know what we are looking for. Insurance doesn't cover those type of lifts, but do cover Hoyer lifts, which we will hopefully have for the rest of the house as it is open-concept and one floor. But, the Hoyer lift does not fit into his small bathroom. We found a gently used on at Habitat for Humanity on Sale for $4500, so we need to act quickly on this as their off the shelf cost runs about $15,000.

2)Obviously with William's new breaks, we know how every thing from moving, to therapy, to every move will have to be careful and well thoughtout. Improper lifting, carrying, sitting, standing, etc, will cause additional broken bones. Fortunately, we know there are not any "old" breaks, that we missed based on his scan, but what we know now is that he was osteopenia, a step before osteoporosis, despite everything we know how to do. The BEST THERAPY for him now is aquatic therapy, you can weight bear (stand) but not at 100%, its easier on his bones, it relaxes his muscles, and we have seen just how 30 minutes a week can help him start kicking his legs and taking his first steps! So now Robert and I know 30 minutes a week isn't enough, and we have to drive 60 minutes round trip to get there, transfer him into the car, out of the car, out of his clothes (which believe it or not can be very very difficult when they can't riase their arms, more risk for a break), transfer into the pool, out of the pool, back into his clothes, into his wheelchair, into the carseat, out of the carseat, and back into the house. Whew. So, there are a lot of chances for injuries with all of the transferring. He needs water therapy available at our home so we don't have worry about transferring anywhere, its in the comfort of his own home, and we can do it as much as we want to with him. We don't need anything fancy as it will be inside, and we have priced them. A 2-3 person, least expensive jets, no fancy lighting etc etc, runs $3700 (I'm including delivery and setup in that price). We have done extensive searching online, and there is a cheaper one at WayFair, but it doesn't include setup. Picture below. I have exhausted any and all grants for one of these, with no avail so if you know of one please let me know!

3) We got an estimate from a contractor for an ADA accessible ramp to our house from our driveway, so we can eliminate carrying him up the stairs and risk falling. That estimate is $4,975. Our insurance will not cover this ramp. I don't have a picture for this as it would be custom to our home. But the estimate is from the ADA contractor (he modifies homes based on the American Disabilities Act guidelines) and he estimated $4975.00.

GRAND TOTAL NEEDED FOR WILLIAM'S EQUIPMENT: $13,200

I wish I had tee-shirts or decals or something to offer (UPDATE, WE DO NOW HAVE AWESOME CUSTOM MADE TEESHIRTS AVAILABLE! Check newer post for link), but I don't at this time, but we will be working on something to return to you all for your support, Meanwhile, if you would like to donate towards these investments, please hit the donate button above or send a check directly to us. We really appreciate all you do for us and I hope you know how grateful we are! He's getting big fast and moving him is becoming dangerous without support.
OUR GOAL: IMPROVE QUALITY OF LIFE
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Please follow our story at
www.facebook.com/sweetwilliamswarriors
We are raising funds to help pay medical bills.
William turns 3 soon!
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Hello followers! Our next fundraiser will help cover travel expenses to Hunters Hope Medical & Scientific Symposium in New York. There we will meet (this will be our first time) many other families affected by this disease from all over the world. The Symposium is 3 days and is packed full of informational lectures and meetings. I can't wait to meet all of my extended Krabbe Family. Will you help us purchase the airline tickets?
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Supporters near and far, William has his very own Facebook page that "William's Warriors" post updates on his progress and also upcoming fundraising gigs. Please like and share his page and let's get the word out about Krabbe Disease!
https://m.facebook.com/sweetwilliamswarriors/
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Read a Previous Update
Monica Hudson
39 months ago

Hope enough money will be raised for this sweet little boy who desperately needs our help!

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Savanna Babcock
39 months ago

How is baby William doing? ;) Continued prayers and hope all is well!

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$35,310 of $50,000 goal

Raised by 364 people in 40 months
Created December 13, 2014
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$150
Anonymous
4 months ago
SA
$50
Sam Allison-Rodriguez
9 months ago

All our love to you sweet William!!!

$100
Anonymous
9 months ago
MV
$75
Mimi Vandewege
9 months ago

God bless you William and family!

Monica Hudson
39 months ago

Hope enough money will be raised for this sweet little boy who desperately needs our help!

+ Read More
Savanna Babcock
39 months ago

How is baby William doing? ;) Continued prayers and hope all is well!

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