| #ffffff;" /> | | | | As an inspiring individual, Elizabeth Nash was selected |
| When a child is first diagnosed with a medical | | | | to carry the 2002 OlympicTorch through Union |
| condition, especially a life-threatening one, the first | | | | Square in San Francisco. Liz died at nearly 33, well |
| question many parents understandably ask is, | | | | past her “statistical average” at the |
| “How long does my child have to | | | | time but her spirit lives on as her example and |
| live?” Medical professionals respond by quoting | | | | courage continue to bring hope to many. |
| the statistics. | | | | With many medical conditions, there is a strong |
| Statistically, all illnesses have a somewhat predictable | | | | correlation between good self-care and longevity. |
| course or an “average life | | | | Parents can use statistics to inspire hope and spark |
| expectancy.” But statistics based on the | | | | an “I can beat this” attitude. Parents |
| group norms may be very misleading and even | | | | who give off positive, “we can beat |
| disabling when applied to individual children. It’s | | | | this” vibes generally raise kids with the same |
| very hard to predict who will be among the many | | | | determined spirit. We have met many CF parents |
| who “beat the odds.” | | | | and their children who demonstrate this indomitable |
| Historically, medical professionals have been known to | | | | and inspiring attitude. |
| advise parents of children with cystic fibrosis not to | | | | In summary, wise parents handle statistics and |
| worry about saving for their children’s college | | | | medical predictions by: |
| education. And parents have been known to lower | | | | • Emphasizing that significant medical progress |
| their expectations concerning their children’s | | | | is being made in almost all areas, and that health and |
| performance in school, sports, or other important | | | | longevity are increasing for almost all illnesses. |
| matters relating to the future and living a | | | | • Realizing that for all individuals, the future is |
| “normal” life. | | | | unknown. Many lives are shortened by unexpected |
| This lowering of expectations, with its suggestion of | | | | illness and traumatic events. |
| a “What’s the use?” attitude | | | | • Encouraging their children to believe that |
| does a great disservice to children. It encourages | | | | they have every chance of being one of those |
| them to become both entitled and to feel hopeless | | | | children “who fall on the high side of the bell |
| within themselves. Achievement and self-image both | | | | curve because you take such good care of |
| suffer. | | | | yourself.” |
| The average life expectancy for many diseases is | | | | • Understanding that the quality of a life is |
| increasing at a fairly rapid rate due to medical | | | | measured not by its length, but by the amount of |
| advances. What might be an accurate statistic today | | | | love, accomplishment, and giving that fills it. |
| probably won’t be tomorrow. While it is | | | | • Understanding that worrying about the |
| important to understand the statistics, it is not helpful | | | | future and chewing on the mistakes of yesterday |
| to be governed by them. The Nash family knew this | | | | rob both today and tomorrow. The resulting |
| to be true: | | | | hopelessness, negativity, and worry can shorten lives |
| When Liz was diagnosed with cystic fibrosis in 1973, | | | | and certainly diminish the quality of life. |
| her parents were told not to expect her to graduate | | | | • Believing that those who bravely face |
| from high school. She did much more than that. Liz | | | | life’s obstacles build a character that not only |
| earned a PhD in molecular genetics, interned at Johns | | | | leads them to be more capable people and leaders, |
| Hopkins University and went on to become a | | | | but sets an example that enhances the lives of all |
| research scientist in CF. She also volunteered as a | | | | with whom they come in contact. |
| mentor to teens with CF, who struggled with | | | | Answering a child’s questions about the |
| thoughts about their future and medical compliance. | | | | course of his or her illness can be difficult. How can |
| Liz was optimistic, enthusiastic, and passionate about | | | | parents answer their child’s questions with |
| her life’s work and interests. She shunned the | | | | hope if they have not come to a good place |
| limitations imposed by CF. As captain of her college | | | | themselves? The child will almost always take the |
| ski team she refused to give up the sport when | | | | parent’s cues. So don’t let scary |
| oxygen became necessary. She simply skied with a | | | | statistics rob your hope and joy! |
| backpack filled with portable oxygen tanks. | | | | |