ALS · Family · Medical · Muscular Dystrophy · Uncategorized

Needs (Updated 12/1/2019)

First, let us start off by shouting THANK YOU from the rooftops! We cannot express enough how grateful we are for your support, love, prayers, donations, food, and goodies. We have an incredible group of friends and family and a whole community of strangers who have rallied behind us.

Second, we were asked to put together a list of wants and needs to help focus efforts. Some of these are in the works or people have expressed an interest in helping with them. The reality is that we will need more financial resources to accomplish most of these. :/ I wish that wasn’t the case, but that is the truth. If you have a thought, suggestion, or would like to help with any of these, please email or call me. I am going to try and coordinate efforts so there is not duplication or wasted time.

Accessibility Needs

  • Grab Bars and Ropes in Bathrooms (Will need to happen after remodel)
  • Wheelchair accessible van/bus that will carry the family (Must seat atleast 12 plus the wheelchair…that’s how many kids don’t drive yet, thus the need for me to be able to carry all of the chicks. We had one in the works but the guy took a deposit and then sold it out from under us.)
  • Wheelchair ramp in garage (Family member doing this over Thanksgiving)
  • Reprogram garage door with new openers
  • Gait/Transfer Belt
  • Accessible bathroom on main floor (accessible by wheelchair and room for help with transfers)
  • Remove carpet and replace with flooring that is wheelchair/accessibility friendly specifically in common spaces and master bedroom.
  • Second ATV ramp to use for the backyard until the ramp is built in the garage.

All of the contractors we have had look at the house all agree that the upstairs bathroom is the most feasible to make accessible.  In order to do that, we will need the following modifications:

  • Bathroom Remodel Upstairs (Roll-in shower, open space, wider door)
  • Lift for moving between floors
  • Structure modifications to backyard decking that supports the lift
  • French doors on back of house (In dining area and master bedroom) so that he can access the upper floor
  • Accessible bathroom on main floor (Accessible by wheelchair and room for transfer)

Healthcare Needs and Wants

  • Water softener
  • Humidifiers (If you have one you aren’t using and it is mold free, we would LOVE it!)
  • Hyperbaric Chamber (This would work wonders for Ben, Boden, and Bridger…but definitely a want due to how expensive they are.  This is not currently covered by insurance but was highly recommended by the boys doctor as well as a treatment for Ben).
  • Whole House Water Filtration – three of the boys tested for high levels of lead and mercury in their blood.  This is likely due to the water supply and blood work shows systemic exposure. Their doctor recommended a system to remove it to prevent further toxicity.

Repairs We Need Help With

  • Reframing the front door (its sagging?)
  • We have a vibration in our water pipes.  We need a plumber to diagnose and find the vibration so it can be fixed.
  • Repair/replace a leaking water heater that is gas (We have the part for this if it is just a repair but are uncomfortable messing with the gas) Thank you TODD HILL!
  • Re-aligning our garage door so that it shuts when I push the button 🙂

Donations and Fundraisers

Andy Birch’s Gofundme  https://www.gofundme.com/f/battle-for-big-ben?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cp+share-sheet

Diane Burnham and Kim Aguilar Christmas Help: Please contact them at  Theburnhams0114@outlook.com  ecuakim@hotmail.com

Remi’s Pies and Baked Goods: Order the BEST pies and goodies for the holidays through Remi https://www.facebook.com/events/765608463898729/

Again, we are SO VERY GRATEFUL! Thank you thank you thank you!

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