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Avery's Powerchair Fund

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My precious son Avery was diagnosed with Duchenne Muscular Dystrophy on Valentine's Day 2007. Cupid could not have delivered worse news to our family on that day, but throughout the years, Avery's determination, inner light and amazing personality has kept our spirits lifted as we take this journey together.

Duchenne Muscular Dystrophy, (DMD) is the most common, life-limiting neurolmuscular disorder. It is a progressive, muscle wasting disease for which there is currently no cure.

In April of this year, Avery lost the ability to walk and has become completely reliant on the use of a power wheelchair to maintain quality of life and independence. While he has a basic power chair now, because of the progression, it is not the right powerchair that will maintain his independence and provide him with both quality of life and limit the need for painful surgeries and slow down the progression of his disease.

In March, I began a long battle with United Healthcare and our state funded DME agency to obtain the powerchair Avery needs. Through two long appeals which have taken countless hours away from my family and keeps me up at night fighting endlessly for my son, his powerchair has ultimately continued to be denied. I have lost faith in our healthcare system and the people who make decisions based on poor guidelines and do not consider the best interest of the patient.

DMD is fatal. I have learned over the years how to take the best care of my son and slow the progression with the proper medical care, diet and durable medical equipment to assist in his daily care. DMD causes reverse milestones in which the most basic things most take for granted are taken away. Through the use of the proper powerchair, Avery will be able to maintain his independence and it will allow him to both access his enviroment to the best of his ability and prolong his health. Without it, he will most likely progress more rapidly and will not be able to withstand long school days. He will also require assistance with even the simplest of tasks rather than maintain a sense of independence which can be so damaging to his self-esteem as he already is challenged with so much.

Avery began middle school in September and it is only thanks to Permobil allowing him to borrow a proper powerchair during this long, unnecessary battle he has been able to attend school.

I know it is a longshot and $40,000 is a lot of money to raise, but I also know that Avery is worth fighting for and deserves to live the longest and most comfortable life possible. That is why I am asking for the help of family, friends and strangers both near and far. Desperate times call for desperate measures and as a one income family who already has many medical expenses caring for Avery, there is no way we can afford to purchase this chair without your help. Please share this with everyone you know and my hope is that we can raise this money quickly together and help my beautiful son in the process.

Donations 

  • Anonymous
    • $50 
    • 8 yrs

Organizer

Lee Ann Faeth
Organizer
Los Angeles, CA

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