Family Support: Twin Sister Carries Twins for Neurofibromatosis Type 2 Patient

According to a story from The Columbian, twins Jill Noe and Whitney Bliesner had developed a deep bond during their childhood days growing up in Oregon. However, they did not look alike and had different interests. There is also another key difference between them: Whitney has neurofibromatosis type 2, a rare genetic disorder. Their connection was taken to a new level when Jill gave birth to twins as a surrogate for Whitney. Since Whitney had a fifty fifty chance of passing on the disease, her and husband Pete began to explore alternatives to a traditional pregnancy.

About Neurofibromatosis Type 2

Neurofibromatosis Type 2 (NF2) is a genetic disorder that has impact on a number of the human body’s functional systems. NF2 is caused by a mutation of the “Merlin” gene which plays a role in the movement and form of cells. This mutation is heritable, but about half of cases are the result of spontaneous mutations. Symptoms of NF2 include muscle wasting, the appearance of benign brain and spinal tumors, coordination issues, unusual flaps of skin, hearing loss, and vision disorders. People with the disorder also have greater risk of cardiovascular disease and cancer compared to unaffected people. The severity of symptoms can vary greatly; some people live fairly typical lives, whereas others are faced with serious quality of life challenges. There is no cure, and treatment generally involves managing serious symptoms and complications as they appear. To learn more about NF2, click here.

Sisterly Love

Being a surrogate is of course an extremely huge undertaking; it essentially means that you are willing to put your own life on hold for a while and endure the challenges of pregnancy for someone else. Thankfully, Jill’s pregnancy was relatively uneventful. Jill was implanted via in-vitro fertilization and gave birth to boy and girl twins Rhett and Rhenley. 

Her sister’s commitment will allow Whitney to experience motherhood even though her disorder would have made it a much more risky undertaking if she had gotten pregnant herself. Whitney has lost vision in her left eye and has had six surgeries to get rid of her brain tumors. Sometimes living with a rare disease means being willing to get support and help from the closest people in your life; the bond between these twin sisters is going to last a lifetime.


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