Richard Atwood

An Irish Genealogy of Hemophilia—and a Mystery

With St. Patrick’s Day coming up, I thought it would be interesting to look at an Irish tale involving hemophilia. From our archivist and researcher from North Carolina, Richard Atwood: “Ghosts of the Missing (2020) is a cold case missing person mystery that accurately portrays hemophilia, then weaves it into the multigenerational story of missing girls and their ghosts. The author, Kathleen Donohoe, who serves on the board of Irish Americans Writers & Artists, lives in Brooklyn, New York.” From Amazon: In the vein of The Lovely Bones and The Little Friend, Ghosts of the Missing follows the mysterious disappearance of a twelve-year-old girl during a town parade and the reverberations of this tragedy throughout the town.

William Moye builds his foundry in the Hudson River Valley in what will become Culleton, New York. Irish-Catholic immigrants work in the foundry, which specializes in creating bells. The workers live in the shantytown called Cullytown. Helen Dunleavy, age 16 with green eyes, arrives in 1856 to work in the Moye household. She comes from Ballyineen (or Daughtertown) in Galway, Ireland. Dunleavy women are healers: they have the ability to cure. The women are also cursed: girls live, while the boys die in infancy. Helen brings to America the cure and the curse, or broken gene (later identified as factor VIII deficiency or hemophilia A). Her son dies, while her twin daughters, named Clara and Lucy, live. Clara does not have the gene. Lucy has it and passes it on.

Cassius Moye, the son of William, is born in 1843. He is captured during the Civil War, and develops tuberculosis. When he returns home, he writes The Lost Girl and Other Stories. His cousin Augustus runs the foundry. At his death in 1884, Cassius passes the Moye House to his publisher, who eventually sells it to Marjorie Moye Pearse, a descendant of Augustus, in 1946. The Moye House Writers’ Colony is established in 1953 to be located in the house where Cassius Moye was born. Culleton holds a Lost Girl celebration every October 27. Cecilia Burke, a descendant of Lucy Dunleavy, marries Daragh McCrohan and has two sons, Michan and Cathal. Both sons have hemophilia. Their factor VIII is a miracle treatment: it saved them before it killed them. “Factor VIII was a blood product manufactured as a powdered concentrate that caused blood to clot.” (p. 79). Michan, born in 1967, is spared HIV due to immunity or resistance, but acquires Hepatitis C. He becomes a poet and a professor at Gilbride College.

As a bachelor, Michan takes up residence in Moye House and publishes Lost Girls: An Anthology of Stories Written at Moye House Writers’ Colony. Cathal and his wife Lissa acquire HIV and die of AIDS, while their daughter Adair develops AIDS. Michan brings the orphan Adair, then 11, to Moye House in 1994. Rowan Kinnane is a fifth cousin of Adair McCrohan (Helen Dunleavy is four times great grandmother to both girls). Rowan, a descendant of Clara Dunleavy, befriends Adair, who is shunned at school for having AIDS. On October 28, 1995, Rowan, aged 12, disappears under suspicious circumstances. The police never solve her case.

Adair starts HAART treatment, an antiviral cocktail, in 1996. Adair experiences visions of Rowan. In 2010 while living in Brooklyn, she stops taking her medicines to be hospitalized with pneumonia. She returns to Moye House under the care of Michan, once again. Ciaran Riordan, a stepbrother of Rowan living in Ballyineen, Ireland, enrolls in the Moye House Writers’ Colony to research missing children, including Rowan. Both Adair and Ciaran investigate the disappearance of Rowan by eliminating suspects and finding clues associated with the rowan tree, or quicken tree, located next to the Rosary Chapel and a book of magic called A Charm for Lasting Love: Spells and Cures from Ireland, that includes a cure for the chronically ill.

Adair McCrohan explains hemophilia: “Culleton had known for a century that my family was cursed. Boys die. Girls live. At least this was how they put it before the disease was called by its proper name: hemophilia. From the Greek: haima = blood + philia = to love. Though ‘to love’ in this context is interpreted as “tendency to.” The blood doesn’t clot properly. Tendency to bleed. Women are carriers. Their sons get the disease but their daughters don’t.”

Concussions and Hemophilia

Recently, a mother posted a question on a Facebook mothers’ group: how did everyone feel about allowing their child with severe hemophilia to go on roller coaster rides?

It’s a great question. During summer, I usually rerun one of our most popular “As I See It” pieces, on rollercoasters and head injuries, by the now retired but always great Dr. Richard Lipton, formerly of Long Island Jewish Hospital.

Also recently, our amazing archivist, Richard Atwood, of North Carolina, sent to us his review of the 2015 movie “Concussion,” starring Will Smith, about the discovery of chronic traumatic encephalopathy (CTE). It’s a fabulous movie, based on a true story, that uncovers how repeated head blows can lead to degenerative brain functioning. Hemophilia is mentioned in the movie.

Richard writes: “I’m surprised that the hemophilia community didn’t acknowledge this movie when it was released. Of course, it’s Hollywood. While the facts may be inaccurately portrayed, the movie still tells the important story of CTEs.”

So while there might be still time to visit an amusement park before summer ends, read this review, watch the movie and also read our article by Dr. Lipton.

During September 2002, in a Pittsburgh, Pennsylvania courtroom, Dr. Bennet Omalu testifies as an expert witness at the retrial, after the successful appeal, for a convicted murderer named Thomas Chambers. Dr. Omalu presents his credentials: medical degree from the University of Nigeria, residency at Columbia University, master’s degree in public health for epidemiology, board certification in pathology, certified physician executive in emergency medicine, completing an MBA at Carnegie-Mellon University, and a master’s degree in the theory of music from the Royal School of Music in London.

Dr. Omalu displays a blown-up photo of the hands from the female murder victim, showing blood, scratches, and torn fingernails, to demonstrate how she fought her killer, and lost. Dr. Omalu also displays a blown-up photo of the hands of the defendant, showing blood from the victim, but no wounds. Chambers claims that he only touched the female victim to aid her. Dr. Omalu is puzzled by these photos. He learns from the medical records that Chambers stated, “I hate blood,” because as a child, after he had a tooth pulled, the bleeding did not stop. There is a history of hemophilia in the family, yet Chamber’s father, when asked, stated that there is none. Dr. Omalu tests for a strain of hemophilia A so rare that it is not tested for. Thomas Chambers tests positive for hemophilia A. Dr. Omalu claims that if Chambers were scratched or bitten, then he would bleed to death. Therefore, convicting Chambers to a death sentence would be killing an innocent man.

Dr. Omalu, the most junior coroner in Pittsburgh, Pennsylvania, is on call when the body of Mike Webster, age 50, a former Pittsburgh Steelers football player, is brought to the morgue after his suicide. Dr. Omalu, at his own expense, studies Webster’s brain. When he finds tau protein in the brain slides, similar to the effects of Alzheimers’ disease, Dr. Omalu calls the condition Chronic Traumatic Encephalopathy (CTE). He publishes his case report in a medical journal. The National Football League disputes the scientific proof of CTE being caused by football collisions because, according to the NFL, football players do not experience concussions. Dr. Omalu finds CTE in the brains of other deceased former professional football players, but the NFL continues to dispute the results, even snubbing Dr. Omalu at a medical conference on concussions.

This movie is based on a true story. The Special Features selection on the DVD includes a short documentary film called ‘Inside the True Story.’ The real Dr. Bennet Omalu, Dr. Julian Bailes, Dr. Cyril Wecht, and Dr. Ronald Hamilton are interviewed. The viewer can compare these individuals to the actors who play them: Will Smith, Alec Baldwin, Albert Brooks, and Stephen Meyer. The author Jeanne Marie Laskas, who wrote the article and the book about Dr. Omalu’s discovery of CTEs and his fight with the NFL, is listed as a consultant in the movie credits. Hemophilia is mentioned only in the short opening courtroom scene, in which Dr. Omalu is introduced to the movie audience. The movie states that certain names and situations have been altered, and this is evident from the retrial of the real individual with hemophilia named Thomas Kimbell (not ‘Thomas Chambers’), who never touched any of the four murder victims (not just one female). Will Smith does not exhibit the real Dr. Omalu’s short height, shrill voice, or shrieking laughter, and even tones down his Nigerian-formal English accent, yet he still portrays a convincing character role.

Concussion, 2015, Sony Pictures. Writer and Director: Peter Landesman

Cast: Will Smith, Alec Baldwin, Albert Brooks. Rated PG-13; 2 Hrs. 3 Mins.

Remembering Fathers in Hemophilia: Samuel Appleton

A tribute on Father’s Day to the first known father of a son with hemophilia in the Americas

by Richard Atwood

I search for intriguing stories about people with bleeding disorders. By discovering those stories, including historical ones, I always learn something valuable. Often, I find inspiration in the stories of other family members, as in the case of the Appletons, who were connected with the powerful origins of our country.

One father of a child with hemophilia was Major Samuel Appleton (1625–1696). His son, Oliver Appleton, was the first person identified with hemophilia to be born in the American colonies.1 Samuel spent a lifetime in public service fulfilling legislative, judicial, and military roles. He stuck to his principles about the illegality of improper taxation, and he remained calm in times of distress—during battle, and during the infamous Salem witch trials.

Samuel was only 11 when his family left England to settle in the Massachusetts Bay Colony in 1636. His father, also named Samuel, was one of the original settlers of historic Ipswich. The family owned a house and eight acres in town, and a 400-acre farm on the Ipswich River. 2

One of five children, Samuel grew up to help run the family farm and businesses. He married Hannah Paine in 1651, and they had three children. After his wife’s death, in 1656 he married Mary Oliver (1640–1698), a hemophilia carrier, and had eight more children, including Oliver in 1677. Oliver’s bleeding disorder was noted by family members, but probably not as a genetic condition. Only later, in retrospect, did family members realize the distinctness of the bleeding.

Due to periodic threats of Indian attacks, Samuel Appleton led the local militia. From lieutenant in 1668, he rose to the rank of captain during King Philip’s War, and commanded an infantry of 100 men. At the decisive battle near Hatfield along the Connecticut River in 1675, Samuel was commander-in-chief of more than 500 men. A turning point for the colonists, this battle proved that the Indian warriors could be defeated. During the fighting, a bullet passed through Samuel’s hair. If he had died then, his son Oliver with hemophilia would never have been born.

Samuel held several elected offices. As a legislator, he was a commissioner of Essex County in 1668. He was a representative of the General Court from 1669 to 1680. And he served on the Governor’s Council from 1681 to 1692. Appleton opposed the government of the colonial governor, Sir Edmond Andros. When in 1687 Andros levied a tax of one penny on a pound, the town of Ipswich refused to collect the tax, stating that it was against the rights of Englishmen for any taxes to be levied without consent of an assembly chosen by landowners, or “freeholders.” An arbitrary and illegal warrant was issued for the arrest of Samuel and other leaders in the opposition to the tax. Samuel took refuge in Saugus, where he stood on a rock and denounced the government. A Massachusetts historical marker now acknowledges the site as “Appleton’s Pulpit.” Refusing to apologize, Samuel was imprisoned in November 1687. He petitioned in January for his release due to his age and weakness, but wasn’t freed until March 1688, when he posted a 1,000-pound bond.

In 1689, during the coup of crown-appointed Governor Andros, Samuel and other leaders in the Massachusetts Bay Colony put Andros on a boat to the island prison in Boston Harbor. Colonial revolutionaries 100 years later simplified the opposition to taxes with the slogan “No taxation without representation.” But it’s important to remember that the ideas for the American Revolution began long before 1776: to be properly recognized, Ipswich adopted the motto “The Birthplace of American Independence 1687.”

Samuel Appleton served on the judiciary. He was a deputy to the Massachusetts General Court from 1668 to 1681. As a member of the Council of Assistants from 1681 to 1686, Samuel attended the examination of accused witches in Salem on April 11, 1692. His role may have been minor; he isn’t always listed as one of the seven judges. And apparently he did not serve as a judge in any of the trials that executed 20 alleged witches in 1692. On May 2, 1693, the first Supreme Court convened in Ipswich to try Andover residents charged with witchcraft. As a judge at that hearing, Samuel cleared everyone accused of witchcraft, ending the infamous witch trials and demonstrating his rationality. During the hysterical witchcraft proceedings in Salem, Oliver Appleton was a 15-year-old with hemophilia living at home in Ipswich.

The story of Major Samuel Appleton reveals essential information about colonial America. Some of our defining principles that we cherish today were sown by the colonists years before the revolution for independence. We need to honor those colonial leaders for their contributions, and remember that Major Samuel Appleton also raised a son with hemophilia.

1. “The Appletons: America’s ‘First Family’ with Hemophilia.” PEN, Nov. 2002.

2. That farm still exists today. Called Appleton Farms, it is the second oldest continuously run farm in America, now administered by the Trustees of Reservations, a nonprofit conservation organization in Massachusetts.

© 2016 LA Kelley Communications, Inc. Reprinted with permission. All rights reserved.

The Bloody Book of Blood

Like the pages out of Ray Bradbury’s Fahrenheit 451, we’re seeing books get banned in some states. Math books, even!  Our favorite hemophilia archivist, Richard Atwood of North Carolina writes, “School libraries, and even their school librarians (can you believe it?), are under attack, with more and more books being banned for their content.” Richard provides a review below of juvenile literature that explains blood, including hemophilia, to young readers. He adds, “Kids seem to enjoy being grossed out!” And hopes it does not get banned!

This text on blood in Kelly Regan Barnhill’s  2010 book, The Bloody Book of Blood, is classified as juvenile literature. Hemophilia is included among the numerous blood topics. Hemophilia is explained in the section “Blood Disorders” that is accompanied with a photograph of a bruise on page 22. The text states: “Hemophilia is a rare, but serious blood disorder. This disease keeps a person’s blood from clotting properly. Patients with hemophilia need to be extra careful. A cut can bleed for days, and it may never heal completely. Even a small bruise can be a big problem. The extra blood pools under the skin, causing the bruise to grow to a huge size.”

Hemophilia is defined in the glossary, along with a pronunciation guide. The text states: “hemophilia (hee-muh-FIL-ee-uh) — a health condition in which blood does not clot normally.”

This is an educational book, part of The Amazingly Gross Human Body series that includes texts on blood, vomit, spit, snot, sweat, and… pee. This short book with a large font includes one page for a glossary, one page for an index, one page for “read more” and internet sites, 16 illustrations, and 4 “gross facts.” Michael Bentley, a professor of biology at Minnesota State University, Mankato, acted as a consultant.

“The author simplified the definition of hemophilia appropriately for juvenile readers, yet a simple note on proper treatment, and maybe genetics, would be beneficial,” Richard adds.

Kelly Regan Barnhill.  2010. The Bloody Book of Blood. Mankato. MN: Capstone Press. 32 pages.

America’s “First Family” With Hemophilia

It’s Thanksgiving time in America, and living in the Boston area, one cannot help but think of how our country was first founded, and by who. When I travel just 15 minutes from my house to Newburyport, Massachusetts, a lovely seaport city, I can read plaques on the houses that read “1820,” “1775” and even “1656”! Many of these houses have existed since before America was born! Boston is the birthplace of our country, and Massachusetts is naturally a state of many firsts.

It was in Plymouth, Massachusetts that the Puritans landed; and here that the settlers weathered the severe first winters with help from the native tribes. And it was here that the first person with hemophilia was born in the US! In fact, I can travel 15 minutes from my house and see where he lived.

I run the following article almost each year, so we can remember this famous “first” family in the US: enjoy!

New England, 1639. Imagine that you are standing on the deck of the sailing ship Jonathan. You have just glimpsed the shore of your new home, the Massachusetts Bay Colony. Imagine the brilliant New England foliage, the bright chilly wind. Imagine your dream of farming your newly acquired land. Imagine the adventure. Now, imagine that you are the first European with hemophilia to step on the North American shore.

John Oliver (1613–1642) traveled from Bristol, England with his family to settle under the leadership of the Massachusetts Bay Company. He lived for only three years after he reached North America, fathering one child, Mary, and dying young as a consequence of his hemophilia. Not until after 1800 did the medical community begin using the term hemophilia to describe his disorder. John’s daughter, Mary Oliver (1640–1698), was likely the first hemophilia carrier of European descent born in the colonies. With her husband, Major Samuel Appleton, Jr. (1625–1696), Mary had three daughters and five sons. One of these sons, Oliver Appleton (1677–1759), was the first American colonist born with hemophilia!

Early Ipswich Roots
Mary and Major Appleton lived in a settlement known to native Americans as Agawam, but re-christened by the English in 1633 as the town of Ipswich. What would life in Ipswich have offered their son, Oliver Appleton? Thirty miles north of Boston on the Atlantic shore, Ipswich was owned by the Massachusetts Bay Colony; it was purchased earlier in the century from Native Americans for 20 British pounds. By the mid-1600s, Ipswich ranked second only to Boston in population and wealth. The Appletons were a wealthy colonial family. Major Samuel Appleton, Jr., Oliver’s father, was the son of Samuel Appleton Sr., one of the “landed gentry,” and a good friend of John Winthrop, the first governor of the Massachusetts Bay Colony. Appleton’s fertile 460 acres of farmland had been granted to him by the Colony in 1638, and left to his son, Major Appleton, around 1670. Major Appleton, who served as a judge at the infamous Salem Witch Trials in 1692, died in 1696. He left his now nearly 600 acres, split into four parcels, to his four sons: Oliver, Isaac, Samuel and John. Oliver’s 100-plus acre inheritance included his father’s sawmill, ox pasture, and farmland bordering his brothers’ parcels.

In 1701, Oliver married Sarah Perkins. Well-to-do millers, farmers and traders, Oliver and Sarah possessed numerous household and farm goods. They were involved in local politics, church affairs and business. Together they raised fourteen children; several sons and their descendants would become fine cabinetmakers. At the turn of the eighteenth century, Oliver and his three brothers were working their adjoining farms in a loosely communal style. Each brother might grow a crop that the other brothers could use. Yet each brother farmed separately, produced his own goods for trade (like basket hoops), and kept his own business ledger. The brothers owned cattle, sheep, turkeys and hogs, and traded goods with family and friends in Ipswich.

A Dangerous Occupation?
On their “new” land (already cleared and cultivated by Native Americans), the Appletons cut and milled timber, raised livestock and worked the farm. Today, farming is still one of the most dangerous occupations. In the seventeenth and eighteenth centuries, its hazards were surely compounded by Oliver’s hemophilia, and the harsh New England winters. Yet Oliver lived to be 82—a considerable age in any century.

Late in life, Oliver was confined to his bed and developed bedsores on his hips. At age 82, his cause of death is recorded as bleeding from his bedsores and his urethra. Oliver appears to have been a generous and fair man, dividing his estate equitably
among his children and his wife Sarah.

Making Medical History
Oliver and Sarah had six daughters and eight sons. Two of the daughters, Sarah and Hannah, had sons with hemophilia. Interestingly, Hannah’s sons, Oliver and Thomas Swaim, were doctors. What would they have thought of their family’s disorder?

Without letters or other documents, we can only guess. Yet it was the Swaim branch of the Appleton family that attracted the attention of the medical community. Based on his personal connection with the Swaim family, Dr. John Hay, a Massachusetts physician, published an article on the Appletons in a New England medical journal in 1813. Following this publication, the Appleton family history appeared in numerous medical journals, at least as late as 1962. By then, the family had been traced through 350 years and 11 generations: 25 males with hemophilia, and 27 carrier females. In 1961 a blood sample, drawn from the last known living carrier in the family tree, revealed factor VIII deficiency, or hemophilia A

Are the Appletons America’s “First Family” with hemophilia? Perhaps, in the sense that our knowledge of hemophilia has been enriched by the study of this large and long-lived colonial family. Thanks to our American Revolution, we have no “royal family” with hemophilia. Yet we can still honor and remember the Appleton family. This Thanksgiving, we can recall the challenges faced by earlier generations with hemophilia—people who contributed to our heritage as Americans, and as a hemophilia community. To understand ourselves, and create our vision for the future, we must always remember the past.

From Parent Empowerment Newsletter, November 2002

“THE APPLETONS: America’s “First Family” With Hemophilia” by Richard J. Atwood and Sara P. Evangelos
© 2002 LA Kelley Communications, Inc.

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