Grant Goes to Washington

Grant was 12 when he experienced a sudden onset of hearing loss. It turns out he has Alport Syndrome (AS), a rare disease which affects not only ears but kidneys as well. For Grant, the news is especially sobering: 100% of boys with Alport Syndrome will face kidney failure at some point in their lives.

I met Grant and his mother Lisa at the Kidney Summit last month. They’re both kidney patients (It was through her son’s diagnosis that Lisa discovered she had this genetic disease as well). Walking across the Capitol grounds in between our advocacy meetings, I recorded this spontaneous interview with Grant about our mission that day:

Grant is now a high school freshman. To hear Grant talk about his life now, you almost can’t believe that he is living with a serious diagnosis. He exhibits the playfulness of a high schooler with a sense of humor that endears him to everyone. He leads what looks like a normal teenager’s life. He likes to bike, read, play guitar. But the Josh Groban haircut covers the hearing aids; he cannot play sports, and he has to worry about his creatinine level and how much protein is spilling into his urine. Yep, not topics on a typical teenager’s mind.

But here he is in D.C. moving in and out of offices with the rest of us adults with the maturity and eloquence of young man who can hold his own. He offers up a powerful argument to Congress members as to why they should co-sponsor the two kidney bills, one of which is particularly personal.

You see, Grant is fighting to protect his brother also. When the time comes when Grant will need that transplant, his brother Mack, who is two years older and does not have AS, intends to be his donor. The Living Donor Protection Act (H.R. 1270) simply allows living organ donors to use time granted through the Family and Medical Leave Act (FMLA) to recover from donation. Currently a patient receiving a kidney transplant can take time off without fear of losing his job. But if you give a kidney, you don’t have the same federal protection.

In addition, under this act, insurance companies are prohibited from denying or limiting life, disability, and long-term care insurance to living donors, and from charging higher premiums.

MackGrantFinalsPic — Mack and Grant Bonebrake share a hug after the lacrosse team they organized to raise funds for Alport Syndrome Foundation just won the Desert Lacrosse Classic Tournament. They raised $8,000, and all proceeds went directly to fund research. Mack pulled together friends from across four states to all come together and play as a team. Grant motivated the players and cheered them all on.

Mack and Grant will likely be young adults when Grant’s kidneys will fail. Insurance and job security will be important issues then. The work we do now will affect their future and ours. Legislative bill H.R. 1270 removes some of the barriers for living donors.

You can also urge your lawmaker to support the Living Donor Protection Act by sending them this quick message. You can also read more about Alport Syndrome here.

Thanks, Grant and Lisa (and the entire Bonebrake Family), for your tireless work. It was a privilege to team up with two as fellow Californians at the Kidney Summit.

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