As we approach this year's final 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.
It's hard to believe but, Brett is still growing!
Brett's needs go way beyond the basics like outgrowing clothes, shoes, etc.
As Brett enters adulthood there are legal requirements and hurdles required
to continue caring for him such as gaining guardianship through the courts.
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 was recently fitted for new molded seating to accomodate his growth. It is the last he will likely get out of the chair he received 8 years ago. We have been holding off on replacing the chair until he is done growing. Later this year we will begin the process of exploring his next chair. As an adult, equipment isn't updated as frequently so we want to make sure we get Brett what is best for his needs as he is in the chair at least 12 hours a day.
As Brett has grown he has had increasing difficulty when he gets sick even with a simple cold. We have needed to add home healthcare equipment such as a suction machine and a vest therapy system to help with coughing as well as a hospital bed to assist with position changes when needed for safe sleeping.
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 saving toward a new accessible vehicle. While it seems like we just got the Transit van it was purchased used in 2018 and has high mileage and repairs have begun to add up. Because of modifications needed to make vehicles wheelchair safe and accessible they are much more expensive than the average van.
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 detailed 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.