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Buildings light up for rare disease

December 4, 2018

On Friday, the Plummer Building will be lit up blue to commemorate the many pregnancies that have ended because of a rare, serious condition.

Every year on Dec. 7, Twin to Twin Transfusion Syndrome Day is when landmarks all over the nation — places like Niagara Falls and others — will feature displays to call awareness to the medical condition.

Local business Carroll’s Corn will also announce a related initiative on its Facebook page sometime in December.

Twin to Twin Transfusion Syndrome, or TTTS, is a rare condition that only affects identical multiple pregnancies (twins, triplets, etc.) with fetuses that share a common placenta.

Abnormal blood vessels in the common placenta can deprive one twin of proper blood flow and cause the other to develop high blood pressure and other complications.

During her pregnancy, Marie Reisdorfer, of Rochester, was thrilled to learn that she was carrying twins.

However, she soon discovered that both girls shared a placenta, and shared blood unevenly, which endangered the pregnancy.

If Reisdorfer had been farther along in her pregnancy when the condition developed, she would have delivered the twins early. However, the risk was too great to avoid any action until the twins reached 27 weeks.

The Reisdorfers traveled to the Twin Cities for laser ablation treatment, which is supposed to correct the blood flow to each twin. However, the procedure does carry a mortality risk.

In September 2016, the Reisdorfers lost both twins — Amelia Katherine and Nora Diana — to the disease.

The TTTS Foundation gave the couple information during the pregnancy, and support during their bereavement. They want to ensure that other families have the same resources available.

Although there’s nothing that can bring her daughters back, Reisdorfer hopes the awareness month will encourage others to donate to a cause that may one day eradicate TTTS.

The TTTS Foundation accepts donations at tttsfoundation.org.

“We wish that they were here, but since they’re not, we want to do something to make their lives meaningful,” she said.

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