This I Believe

Richard - Lincoln, Nebraska
Entered on February 11, 2007
Age Group: 50 - 65
Themes: disability

I Believe in Hope for Jenny and Ella

My daughter Jenny cannot see well enough to read a book, thread a needle, or drive a car. Jenny is legally blind from Stargardt’s Disease, sometimes called juvenile onset macular degeneration. Jenny’s 22 month old daughter, Ella, may also have Stargardt’s, although her big brown eyes miss nothing now. Stargardt’s is a rare genetic condition afflicting approximately 25,000 people in the United States. The portion of the retina responsible for central vision, the macula, deteriorates over time with outset as early as age six. Central vision enables us to read print, clearly see computer screens, distinguish faces at a distance, and trim a baby’s fingernails. At this time there is no treatment and no cure. Life without central vision is difficult.

Jenny was 14 when her optometrist could not correct her vision any better than 20/40. We were referred to a retinal specialist who said she “has Stargardt’s, her vision will get much worse and there is nothing that can ever be done.” I had to explain to Jenny that her vision would inevitability fail and that she would not be able to read the books she loved, would not be able to drive, and that her children might be afflicted. I struggled to grasp the reality of my treasured child’s future disability, and to adjust my hopes and dreams for Jenny’s life. Like all parents, I simply wanted my child to have a happy life, and it was difficult to understand how that could be possible. There were times of great sadness such as when Jenny sought to renew her driver’s license at age 21 but could not pass the vision test. A tearful phone call brought me to the driver testing station to take her home, leaving her car behind, never to be driven by her again.

But, in the end, Jenny found her way and provided the strength her parents needed. She did so just by bravely living her life the best she could. She listened to her college textbooks recorded on to tape by volunteers and her parents, did well in her courses, and graduated. Although her hometown University of Nebraska offered a master’s degree in her chosen field, Jenny felt she needed to strike out on her own. Jenny began her graduate work at the University of Kentucky in the fall of 1996. She was in a strange town, on a new campus, and without a single friend or relative. Despite many obstacles she prevailed. Jenny made great friends who supported her. Her mother and I read textbooks onto tape and overnighted them to Kentucky. Volunteers read other courses for her. She worked in the University child care center, and graduated on time with her master’s degree in marriage and family therapy. During this time she met Brian, and in 2002 she married this kind, loving, and generous man: silencing her father’s fear that no man would love and accept her. Now a Licensed Mental Health Professional, Jenny works for an agency where she counsels people afflicted with both severe mental illnesses and substance addictions. I know her life experiences have made her a superb therapist. And in April, 2005, Jenny and Brian had Ella, a seemingly perfect baby. But the fear that Stargardt’s lurks in precious Ella’s genetic code never goes away.

However, emerging science suggests that embryonic stem cell research might rescue Jenny’s vision, provide a cure for Ella if needed, and help millions of others suffering a variety of disabling and fatal conditions. Thus, in addition to a personal story, this is a father and grandfather’s plea that embryonic stem cell research be funded and encouraged. Reason and rationality dictate that there be a dedicated national effort to pursue the promise that this research holds. Researchers in the field are virtually unanimous in their view that embryonic stem cells hold the greatest promise for treatment and cure for a wide variety of diseases.

I recognize that many people are opposed to embryonic stem cell research. The common rationale I hear for such opposition has its roots in “sanctity of life.” This is not scientific rationale, but a faith based position. I cannot help resent the imposition of this belief system on the nation, when the need and the potential is so great. At this time thousands of embryos, at the most elementary cellular level, remain frozen by fertility clinics and likely to be discarded, meaning their potential to alleviate human suffering and improve lives remains untapped. These elementary stem cell masses, which have not begun to differentiate to form a human being, are accorded greater importance and governmental protection than the living, who, like Jenny and Ella, might be immeasurably helped by using these cells for research.

To deny hope, and the full potential of life, to millions of disabled and ill citizens because “life is sacred” is simply hypocritical when our national policy is, and always has been, that in some circumstances, and Iraq comes to mind, life is obviously sacrificed. I believe we sanctify life by working to alleviate human suffering—including provide hope for a better future. Jenny and Ella deserve to have hope, and I believe that it is their personal right.