Thanksgiving

Giving Season… Within Reason

I don’t want to sound like Scrooge, but the Thanksgiving season, with its #GivingTuesday, turkey brigades and appeals for charitable giving, is ripe for savvy people to take advantage of those who have plenty and want to help. Not always in a bad way; not everyone who needs help is trying to scam us. Most of the requests I get are indeed from people who need either factor or money. But… at what point am I enabling someone to not solve their own problems and learn from the experience, or to be dependent, or to just be not clear with their request, wasting time and resources?

I’ll give you some examples. Just this week I was hit with multiple requests for help. Most popular request? Factor. People contact me via email, Facebook messenger, WhatsApp, text. I don’t always see the requests when it comes at me from all sides. Requests for factor often do not have a clear message: what dosing size is needed? Is the child under a hematologist care? Who is the hematologist? What’s their email so I can verify the request? What address do I ship it to? How about telling me what country are you from first?

Who else is the patient asking? A request to me, while I get busy trying to match assay size and prepare shipments, could also be made to others without my knowledge, and scarce resources end up with one person collecting a lot.

One request this week was made from a patient from overseas who I’ve known for about 20 years. He’s legit—and wonderful. And he’s now living in the US! Becoming a citizen. But while waiting for the paperwork to clear, he needs factor. That I cannot do. Sending prescription medicine over state lines without a license is illegal. So I direct him to his local chapter and a public hospital. He’s okay with that and understands.

Requests for money are increasing. One patient from a developing country this week needs money for a relative with cancer. Testing bills are mounting. Even though I’ve known this patient a long time, I need proof. Doctor’s reports, invoices from the labs, the works. He provides them but they are not in US dollars, and it appears to be like a million dollars! So again, repeated requests for clarification. When he converts it, it’s manageable, so I will wire the money, but I cannot support the full treatment sadly.

There was a request this year from a US charity for hemophilia for a donation. I like giving to our local hemophilia organization, New England Hemophilia Association, and will help support other ones sometimes, especially when patients I know are engaging in walks and such as fundraisers. However, this charity has not published an annual report. An annual report will reveal sources of income by category, and expenses by category. It’s a good way for donors to see where their money comes from and how they spend it. You can compare this info with other like charities to decide if they are being wise with the public’s money. Without an annual report, and accompanying financial statements, I’m not supporting any organization.

And I am always leery of “emergencies” as in send money right away! Speed is a killer. This week came such a request from someone who is not a patient, but used to work in the hemophilia community. I have met her only once. In my entire life. She contacted me years ago when a child relative was in a serious accident (in a developing country) and needed an operation ASAP. She didn’t know who to turn to, and she knew I gave a lot to charity, especially for kids. I checked it out and it was legit. I wired the money… to the hospital for the operation, not to her. The operation was successful. Five years later, with no further contact, a request this week for money. To help with living expenses, for her. To help pay off her bills. I’m wary of the words “You are the only one who can help” and any accompanying Bible quotations about charity. And multiple frantic calls. I have met this person only once: does she have a shopping addiction? Gambling? Drugs? Living day to day and knowing how to manage your money is a maturity problem, not a charity situation. And I’m done raising children.

Years ago I paid the rent for an immigrant hemophilia family who had just arrived in the US from a war-torn land, who just needed a boost. The request was verified by both the local hemophilia organization and the landlord. I paid the landlord three months’ rent. I received a heartfelt thanks and never heard from the family again. They were on track and doing well. No news is good news in this case.

So while it is a month of giving, be careful. Be extra careful when someone tries to FastTrack you. Ask for invoices, receipts, a third party, a hospital administrator in finance to verify, a doctor’s letter on letterhead to confirm diagnosis. A nonprofit should always have an annual report ready for download from its website. Read it. See what they spend their money on. Ask questions, lots of them. That way you can be assured that the money you donate goes to those who really need it.

Hemophilia in Puritan New England


It’s Thanksgiving time! And living in New England, where it all happened, I can’t help but be drawn to our deep and fascinating history. This is where the Puritans landed, where Englishman and native American lived together, where brotherhood sometimes reigned but where wars and viruses also decimated some of the tribes of Massachusetts.

It’s also the location of the original American with hemophilia (if you don’t count whichever native American may have had it first; with no records we will never know). America’s first family with hemophilia was the Appletons. I’ve written about them before here, and we printed a great article about them in PEN, back in 2002. They should never be forgotten, just as our forefathers should not be forgotten.

Arriving in New England on a sailing ship on a chilly fall day in 1639 was John Oliver (1613–1642) of Bristol, England, who had hemophilia. Like many English, he was fleeing the increasingly repressive English environment for Protestants. Indeed, between 1629 when King Charles I dissolved the Puritan-friendly Parliament, and 1640 when the English Civil War began (eventually Puritans under Oliver Cromwell behead Charles and take over), more than 20,000 English left to settle in New England, and in particular, the Massachusetts Bay colony.

John lived for only three years after arriving, 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! And they lived about 20 minutes from where I live now, and to this day, you can go to Ipswich and see the historic Appleton farms.

To read more about this story, and life with hemophilia in colonial America, November 2002 Issue Parent Empowerment Newsletter “The Appletons: America’s “First Family” With Hemophilia,” by Richard J. Atwood and Sara P. Evangelos. © 2002 LA Kelley Communications, Inc. It’s also reprinted in an earlier Blog: https://www.blog.kelleycom.com/search/label/Oliver%20Appleton


Interesting Book I Just Read

The Wordy Shipmates by Sarah Vowell

This is a great Thanksgiving read, and I chose this book knowing it was a young writer’s hip take on the founding of Boston (history near and dear to me). Not about the 1620 Pilgrims but about John Winthrop and his Puritans who arrive on the Arbella in 1630, the Massachusetts Bay colonists. The book is worth reading for the interesting take on history: you’ll learn about the religious motives that drove the Puritans, how they differed than the Pilgrims, who were Separatists, life in old Boston, the Pequot War and massacre, Anne Hutchinson, and the complex relationship between Winthrop (Massachusetts’ first governor) and Roger William (Rhode Island’s founder). All this is done with a snappy, sometimes sarcastic, crisp and witty style they should appeal to young people especially. There are no chapters in the 248 page book, making it a long read, at times a bit tedious on the eyes. I like her style when she is sticking strictly to the history, and she has mostly done her homework.

Sadly, the book has three big problems. First, she veers off into numerous tangents or gets stuck on a subject too long. Somehow Vowell will be speaking about a memorial to the indomitable Anne Hutchinson, and suddenly get on a rant about how business reply cards offer men one check box for their title (“Mrs.”) but women get three (“Mrs., Miss, Ms.”) which obviously is a judgment against women for their lifestyles—give it a rest, Sarah!

Sometimes the religious focus goes on and on, and I wondered where the book was going when suddenly, boom—we get back on track and resume the fascinating story of “olde” Boston again.

Second, her sarcasm, which works well in small doses when spicing up the history, works against her when she attempts, quite inadequately, to parallel events in the 1600s as direct forerunners to modern day politics and world events. Vowell just does not have the academic chops to make these comparisons, and the result comes across as a poorly researched analysis, bolstered mostly by sound bites and shrieking liberalism–and I am a liberal, and found it embarrassing. I felt I was reading a biased essay by a freshman in a college writing class. It was juvenile and took her away from the deep waters of the moment-to-moment events of Boston that I was enjoying, into shallow waters of her political point-of-view, where she lacks depth. She drew very poor conclusions based on hasty and questionable extrapolations.

Third, there’s just too much personal interjection in the book. It detracts from the mostly delightful text; it reflects poorly on Vowell, because she reveals her own skewed biases against any religion, and against modern day conservatives. She is an armchair atheist, proudly proclaiming that she prefers her desk and comfy room, rather than front-line experience. She reveals at somewhat awkward times in the book her own strange childhood experiences with religion. The book becomes more a revealing look at a young author who has some psychological axes to grind. It really does detract from the story.

I recommend the book, nonetheless. If you are a writer or debater this would be a great book to chew on. Vowell should be challenged on her many assumptions, particular when she tries to tie a motto on the Mass Bay Colony logo to American imperialism in WW II, Vietnam, Korea and Iraq, all in one sentence. I think Vowell has talent, but has issues to overcome. If she can get herself out of the way, I think she’d be an outstanding writer. I love the idea of making history entertaining—and by entertaining I mean exciting to read, fun to read, or even thought provoking. Vowell is not there yet, but could be someday. Read it for the history, and be sure to challenge her assumptions, connections to present-day, and opinions. Have fun with it! Boston has a fascinating history and I am glad she wrote about it. Three out of five stars.

America’s “First Family” With Hemophilia


Last week I wrote about the most famous carrier of hemophilia, “Young Victoria,” and that got me thinking that we have our own royalty, America’s first family with hemophilia, the Appletons. This article is from a 2002 issue of PEN, and well worth reading! And, I live about 15 minutes away from the family farm!

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

Good Book I Just Read
Anthem by Ayn Rand

Now, you must know many Teabaggers are citing author Ayn Rand and her philosophy at meetings, on blog sites, etc. Politics aside, I happen to like Ayn Rand a lot. I decided to read this little gem, published in 1947. A daring, thoughtful, if often campy piece, it is a good vehicle for a discussion on Rand’s theory of objectivism.

Anthem is a diary by someone who is in a society of the future, where apparently communism reigns. People are told when to mate, are separated from their babies, told what they will be when they mature. And the word “I” does not exist. Some cataclysmic event wiped out civilization and humankind starts over, with communism at its core. One man, “Equality 7-2521,” realizes he is different and despite being warned not to be, is curious, daring and ambitious. He wants out. One day while acting in his role as street sweeper, he finds a tunnel, which leads to an underground world long forgotten, and every night, sneaks away to explore. Little by little he uncovers the secret of humanity’s past.

A quick read (I finished it in 90 minutes) it has plenty to think about and discuss in book clubs. It’s a bit dated of course, but it’s still worth a read! A forerunner to the TV series “The Prisoner,” I suspect. Three stars.

The Season for SHAREing

Thanksgiving is celebrated on Thursday across the United States but there are thankful people everywhere this week. One of them is Jagat Man from Nepal. Even though we helped him have a leg amputation, he’s grateful to be alive. He has hemophilia with an inhibitor and the bleeding and subsequent tumor in his leg may have killed him.

We have dozens of stories about those we have helped in impoverished countries, and we are pleased to start sharing them with you on a regular basis on Facebook. Project SHARE (Supplying Hemophilia Aid and RElief) now has its own page, and we welcome you to visit, leave a comment, and enjoy learning about your brothers with hemophilia in faraway places, where factor is usually not available.

Visit us at: http://www.facebook.com/pages/Project-SHARE/149435267732?ref=mf

You will even be able to converse with our friends around the world.

In America this week, we can be thankful for our medical care, and above all, the factor concentrate that keeps our loved ones alive. We at LA Kelley Communications are grateful for the resources to be able to send factor around the world, to those in great need and in pain. Thanks to our sponsors, and also to those of you who have sent factor. Happy Thanksgiving!

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