As we approach this year's Bags for Brett Tournament Fundraiser,
it's always important to understand how your support specifically
helps Brett. We wanted to share what Brett's greatest needs are
right now.
As a teenager, starting his Senior year of high school, Brett is still
growing! And his needs go way beyond the basics like outgrowing
clothes, shoes, etc. Brett’s communication device inexplicably
stopped working correctly after a Microsoft update this spring.
After many calls with tech support and sending all of his
equipment to them, they were unable to fix the issue. We are
awaiting approval of a new device even though he hasn’t quite
made it to the 5 year mark insurance requires before
replacement.
Insurance only covers 1 wheelchair every 5 years. Even when it is
a growing child, they do not cover the entire chair, just what they
consider necessary. Brett spends a majority of his day in his chair and it requires molded seating and supports to keep him from
developing pressure sores. The process for fitting Brett and
upgrading chair components can take months. At an appointment
this summer we were told his power chair has reached its max
growth. His next step will be an adult chair but we are hoping to
hold off until he is done growing.
Brett outgrew his standing device and gait trainer during the pandemic.
Because of the shut downs he was not able to get in for an
appointment. We were graciously gifted a standing frame another
young man had outgrown. We have used it for years but he has
again outgrown it and will be in need of a new one soon.
Insurance does not cover any cost for diapers which is a huge
ongoing expense. Last year Brett had more than 100 doctor,
specialist and therapy appointments.
High on the list this coming year is maintenance. While we are so
grateful for the equipment to help with Brett’s day to day support,
several items including his chair lift and van lift are in need of
repairs.
100% of all donations to Bags for Brett go directly to Brett to meet
these many needs. Thank you in advance for any way you can
support Brett's "growing" needs!
More info below. .
How You Help
Wheel Chairs
Brett is still unable to sit-up independently, stand, or walk. Because of this, Brett requires the use of custom wheelchairs, not only to get around, but to support him in special ways. His chair also has to be set up to accommodate his talking device and the switches Brett uses to operate it. Brett requires both a motorized and non-motorized wheelchair depending on the circumstances.
He has almost outgrown his current chairs which is very problematic for his physical well being. Getting a new chair is unfortunately a very expensive and lengthy process.
Feeding Tubes
Brett is fed through a feeding tube. His main meals are tube fed by hand using an extension tube and large syringes of blended foods prepared by the family. Brett also receives liquid “snacks” using an Infinity pump. Brett's medications are also administered through his feeding tube.
This requires multiple pieces of sterile equipment that are replaced daily. Brett's G-tube in his abdomen has to be replaced every 3 months.
AFOs (ankle foot orthosis)
AFOs are custom made to fit Brett properly and assure maximum benefit to Brett. AFOs help control the position and motion of the ankle, compensate for weakness, and correct deformities. AFOs can be used to support weak limbs, or to position a limb to a more normal position.
Therapies
Brett requires therapy several times a week. Brett’s current therapies include physical, occupational, pool physical therapy, and assistive tech/speech.
Like Brett's equipment, insurance only covers a limited amount of these necessary therapies. These are another significant out of pocket expense.