According to a story from KTVZ, Jill Noe and Whitney Bliesner have always shared a special bond. They are twins, now 34 years old. Despite their closeness, they do share one significant difference: Whitney was diagnosed with neurofibromatosis type 2, a rare genetic disorder. Because of potential risks caused by the disease, doctors have told her that having children would be too dangerous. Then Jill made the selfless offer to carry Whitney’s twins for her as a surrogate mother.
About Neurofibromatosis Type 2
Neurofibromatosis type 2 is a genetic condition that is either inherited or may appear spontaneously. It is characterized by the appearance of bilateral, benign tumors in the brain. The disorder is caused by mutations affecting the NF2 gene. Symptoms of neurofibromatosis type 2 often begin to manifest in the teenage years or early adulthood. Symptoms include eye lesions, brain tumors, ringing in the ears, fluid accumulation in the brain, numbness or weakness affecting the arms and legs, and difficulties with vision and hearing. Worldwide, the prevalence of this disorder is around one in 33,000 births. Treatment for neurofibromatosis type 2 often includes surgery to remove the tumors that appear in the brain. If hearing loss occurs, most patients will use auditory assistive technology to help with this problem. To learn more about neurofibromatosis type 2, click here.
Whitney and Jill’s Story
Whitney has been married to her husband Peter for three years, and while she had always wanted to have kids, the medical risks were simply too great. She had grown to accept the reality that it wasn’t going to happen. Adoption didn’t seem like an option, and neither did hiring a surrogate; both of these alternatives were too expensive. Whitney was discussing the issue with her sister when she selflessly volunteered to help.
The reason having children is risky for neurofibrmatosis type 2 patients such as Whitney is because of hormonal changes associated with pregnancy. These changes can trigger the growth of new tumors. As of now Jill is pregnant with a set of twins; Whitney opted not to use her own eggs because she didn’t want to pass her disorder to the children.
This story is an example of why strong support from family and friends is so valuable for improving the lives of rare disease patients.