Care for Thomas Sleeper's Family

In 2019 an astoundingly brilliant, gifted man; a prolific composer, a conductor, a teacher, a father, a husband, a brother, a son, a profoundly special person and dear, dear friend, my dear friend, our dear friend, Thomas Sleeper was diagnosed with the horrific disease, Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig's disease).

A motor neuron disease, ALS affects the nerve cells that control voluntary muscle movements such as walking and talking. There is no cure. ALS is fatal. As motor neurons degenerate, they stop sending messages to the muscles and the muscles gradually weaken and waste away.

Our dearest Thom lost his battle with ALS early on October 15th. Not just as a friend but as a human being, it was devastating to watch his suffering and his loved ones suffering for him.

Yet, in all of the horribleness, there were moments juxtaposed with moments of loveliness. Watching the several nurses, aids and caregivers devote themselves to this man over the last year has been truly moving. For lack of a better way to describe this, these people who were strangers not too long ago to the Sleeper family seem to have individually fallen for this beautiful human being as they devote long, sometimes arduous hours to his care and comfort.

In-home care becomes necessary for most families living with ALS at some point. These incredible strangers have been in the Sleeper home and life 24/7 for more than a year. The expenses associated with in-home care for someone with ALS add up quickly.

As noted on the ALS website, public insurance plans (Medicare and Medicaid) and private insurance plans (employer’s health insurance plan or long-term care insurance) may help to cover some of the costs associated with such in-home help. Still, most of the financial burden is usually endured by the family. A family may spend out of pocket close to $250,000 in healthcare for their beloved. Presently Thom’s wife, Sherri, is paying close to $20,000 a month for 24/7 home care – the beautiful people who have been tremendous blessings to Thom, Sherri and the Sleeper family.

So many of us know that the financial burden cast upon a person’s family saddled with any illness can be massive. The Sleeper family is now sadly very familiar with this.

Personally, being Thom Sleeper's friend has been a privilege and an honor, and his presence in my life has been an awe-inspiring gift. No matter what I was to give back, it would not equal the magnitude of the love and friendship he has shown me over the years.

On behalf of Thom, Sherri and their girls, this fund was created to help ease the burden of the monthly cost of the fantastic aids, nurses, and humans who they could not have lived without during this painfully difficult time.

As the Sleeper family now battles unchartered waters without Thom physically in their lives, with all of my heart, in place of flowers or gifts, I humbly ask you to contribute what you can towards this beautiful human being's beautiful family.