Gypsy Rose Blanchard spent a life suffering through neverending doctors appointments, surgeries, living in a wheelchair, and being fed through a feeding tub. As it turned out, these treatments weren’t a result of her disease– but rather a symptom of her mother’s Munchausen syndrome. Next week, we’ll discuss the impact this story has had on the rare disease community.
What is Munchausen Syndrome?
As reported in Biography, experts believe Gypsy’s mother Dee Dee suffered from the mental disorder Munchausen syndrome, which leads patients to intentionally fake illness in themselves or others. In this case, by proxy onto her daughter. It can lead those with it to fake illness to extreme extents including receiving unnecessary surgeries, medications, and inducing symptoms not otherwise present. Someone with the condition tends to have a long history of medical tests and procedures, often from new and unrelated conditions. They will tend to have inconclusive results and yet continue to pursue medical advice despite the intensive investigations. They tend to be very informed about the medical world and diseases, and tend to pursue seeing physicians in many locations and specialities. They tend not to get better even after getting medical help. They often pursue the most drastic diagnosis or treatment possible. This can be inflicted onto oneself or onto another, who the person with Munchausen’s may look after.
Gypsy Rose grew up with her mother by her side as her most dedicated caretaker, championed for her inexhaustible efforts on behalf of her daughter. From Gypsy’s birth in 1991, her medical record was crowded with diagnoses. As a baby she was said to have sleep apnea, and as a child, leukaemia and muscular dystrophy, seizures, asthma, hearing issues, visual impairments. She had her salivary glands removed, causing her teeth to rot. She had surgeries correcting past surgeries. Dee Dee had told others that Gypsy Rose had an unspecified chromosomal disorder which caused many of these health related incidents. Meanwhile, Dee Dee used her daughters health to garner attention, support, and sympathy. Gypsy was a trophy of her mother’s devotion and care.
How Dee Dee Faked It
However, if not for her mothers attempts to make her otherwise, Gypsy was healthy. This meant Dee Dee had to put in a lot of work to make her sick or appear sick. She would give her medications that would create symptoms of diseases. She had some nursing training which aided her in presenting the ailments realistically and knowing how to maneuver her daughter through the system. By claiming it was a rare disease, it could charade through the medical systems experts for longer and rack up a long list of symptoms. It could be used as the catch all explanation, always murkily diagnosed. She had her undergo numerous eye and knee surgeries that resulted in further complications.
Dee Dee would stop visiting the doctors who questioned her daughter’s condition. She did the same with family, leaving after they questioned why she used a wheelchair when it appeared the daughter could walk. She had lived with her parents, and moved on to get a cheap apartment paid for with her daughter’s disability checks. All along the way, she kept Gypsy home from integrated school to be homeschooled. She had claimed Gypsy was mentally incapable, and until adulthood, she declared Gypsy’s mental age to be 7. This justified Dee Dee’s constant control and undermined whatever Gypsy may say.
Dee Dee ‘illnesses’ led to more than sympathy– the resulted in material gifts too. After claiming to be a refugee from Hurricane Katrina, they received assistance to move to Missouri in 2005. By 2008, they received a pretty pink home courtesy of Habitat for Humanity, wheelchair accessible. They took trips paid for by charity organizations to Disney World and went backstage to see Miranda Lambert courtesy of the Make-A-Wish Foundation. She became a poster child, and they a poster pair, of struggling through disability and the hurricane, yet remaining positive.
When People Grew Suspicious
As Gypsy aged, it became harder for Dee Dee to control the narrative. Gypsy had grown known through the charity they had received, attracting the attention of doctors to her case. Dee Dee had informed her daughter to leave speaking to her, but at 14, she met with neurologist Bernardo Flasterstein. He grew suspicious after his visit that Gypsy she was being subjected to Munchausen by proxy, noticing that she did not need a wheelchair or have any of the conditions her mother said. Though Dee Dee had said the medical record were washed away in the hurricane, he began to contact other doctors from New Orleans. He found doctors who confirmed that Gypsy had been for all intents and purposes, healthy. He realized, perhaps it wasn’t Gypsy who was sick– but rather Dee Dee.
Others reported similar suspicions about Gypsy’s medical conditions. However, when case workers visited the house due to reports, they were satisfied by what they saw. Dee Dee was known to be charming, and successfully convinced them about the realness of the situation. She often made this happen, smoothing over the conversation with claims of Gypsy’s mental state, incapacity, and confusion due to drugs.
Dee Dee altered Gypsy’s age and records to switch her from 19 to 14 to attempt to keep her infantilized. As always, she wanted to limit her daughters freedoms, something increasingly difficult to do.
However, Gypsy was growing up. With maturity, she was realizing the true nature of her medical past and saw much was fictitious and her relationship to her mother. She wanted her freedom, so she began to scheme how. First she tried to run away in 2011 with a man she’d met at a science fiction event, but her mother managed to find her with a man through mutual friends. She went to a neighbours by foot to beg for help, which her mother found her way out of as well. Gypsy was punished for these though, resulting in her mother smashing her computer, chaining her to the bed and threatening her to nail her fingers in. Throughout she was denied food and physically abused. She did not stop though once she had began her quest for freedom. She was chatting to men online despite her mothers threats, eventually finding one man, Nicholas Godejohn, a 23 year old from Wisconsin who committed to help. After she got a rare chance to be alone with him and they were intimate together, she had him convinced that he would kill her mother.
Dee Dee’s Murder
Nicholas and Gypsy’s plan pulled through, and he murdered her mother while she stayed waiting in the bathroom. They left for his home in Wisconsin, while a police search went out for Gypsy who they thought to be kidnapped. According to Gypsy, she didn’t speak out because she felt she couldn’t. She had been conditioned in such a way for her whole life that it seemed nobody ever trusted her account and she had nobody to ask. They always believed Dee Dee. She had managed to use the claim of a rare disease to discount Dee Dee and take away her total freedom.
Today, they both are in jail. Nicholas was found guilty of first-degree murder, and will spend the rest of his life in prison. Gypsy was found guilty of second degree murder, receiving 10 years. She says she is not happy her mother is dead, but she finds prison gives her more freedom than her home did.
What This Means for the Rare Community?
Next week, we’ll post a second part of this story discussing the impact of this tragedy on the rare disease community. Do you have any thoughts on how this story has affect you? Let us know!
