Almost three years ago, Terry was diagnosed with Alpha-1 Antitrypsin Deficiency, a rare, inherited disorder. Alpha-1 is a protein necessary for healthy lung functioning. Because of the Alpha-1 disorder, Terry is battling a serious lung disease, akin to chronic obstructive pulmonary disease (COPD). Terry is one of only two people to have been diagnosed with Alpha-1 disease in the state of Alaska.
While Terry used to be an active grandfather and outdoorsman, he is now constantly on oxygen and largely housebound.
Currently, Terry receives weekly augmentation therapy of alpha-1 antitrypsin protein infusions in his home. This therapy is life-long and cannot restore lung function. It cannot cure Terry.
According to Terry’s local medical providers and medical professionals at the Lung Institute, Terry’s best bet is to pursue stem cell treatment. Unlike the infusions, stem cell treatment could actually provide a cure for Terry’s condition.
Unfortunately, there are no stem cell treatment providers in Alaska. And Medicare and Medicaid won’t pay for the treatment.
That means that Terry has to pay out-of-pocket for this potentially life-saving treatment and that he has to travel to the nearest Lung Institute, in Arizona, to receive it.
But he can’t get there on his own.
Terry needs your help raising funds to cover his airfare, and the airfare of a trained companion who can ensure that Terry has the help he needs while he is rehabilitating after treatment. Terry and his companion will have to stay up to 4 days in Arizona and the stem cell treatment has to be paid for up front.
Please consider giving what you can, even if it is only $1. That dollar brings Terry that much closer to the hope of a cure.
- Garrett Pietrok
- Linda LaVanway
- Family Shabak
Organizer and beneficiary