Tuesday, May 3, 2011

Goodbye to one of our own: Alison Davenport

Last week I was contacted through Facebook by the daughter of a donor-conceived adult friend of mine, Alison Davenport, to inform me that Alison had passed away on April 20th at her home in Southampton, England.  Alison, who blogged her battle at Journey Into The Bubble, had a rare form of non-Hodkins lymphoma.  Alison learned of her conception in the midst of her struggle in the process of trying to find a bone marrow donor, and became very vocal in the media and through her blog.

While I never had the opportunity to meet Alison, I will always remember her for being so courageous and optimistic in the face of adversity.  She was an inspiration for us all, reminding us to never give up hope.

Rest in Peace Alison, we will miss you.


Challenging donor anonymity: Tracing my father could save my life
When cancer sufferer Alison Davenport started to search for a bone-marrow donor, she was shocked to discover that she had been conceived by donor sperm.
Alison Davenport Photo: CHRISTOPHER JONES

By Victoria Lambert          The Telegraph
7:00AM GMT 21 Dec 2009
Sperm donations prior to 1991 were anonymous. There was and is no requirement for a record to be kept. Between 1991 and 2005 (when the law changed again), records of sperm and egg donors were kept, and, since October 2009, any child born of those donations can apply (after the age of 18 or in special cases, 16) for non-identifying information about their biological parent, such as hair colour – but not the name. Those conceived after May 1 2006 can apply to learn their father's name from the age of 18. Donors (from 1991 to 2005) can apply retrospectively to have their names attached to their case files and learn some facts of their donation. UK DonorLink is a voluntary contact register to help older people conceived through donated sperm, and/or eggs, their donors and half-siblings to exchange information and, if desired, to contact each other. In 2010, the Human Fertilisation and Embryology Authority will launch a review of policies including the upper age limit of male donors; the 10-family limit; and reimbursing donors for expenses and loss of earnings. When Alison Davenport began her hunt for a bone-marrow donor the last thing she expected was to stumble on a family secret that would trigger a search for an entirely different type of donor.

Alison, 63, a retired English teacher from the village of Netley Abbey, outside Southampton, was diagnosed with Stage 4 mantle cell lymphoma, in January 2007. This is a rare cancer, a type of non-Hodgkin's disease, which affects lymph sites (where the body's key defence agents, white blood cells, are normally produced). She was warned that it was treatable, but incurable.

"My oncologist was frank, which I appreciated. I was told the life expectancy for mantle cell lymphoma is from two-and-a-half to five years."

She endured a "severe" regime of chemotherapy, but the disease was still present. Doctors advised that a bone-marrow transplant would be her best option. This would allow them to use a high dose of chemotherapy to kill off the remaining cancer. Bone marrow would be destroyed as a result, but a transplant would replenish those missing cells.

Meanwhile, Alison carried on teaching four days a week at Wykeham House School, in Fareham. But, in November 2008, she discovered a swelling in her groin. "I knew straight away that the cancer was on the march again."

In January 2009, she began another 10-month course of chemotherapy. "I was also referred to the bone-marrow team, so that they could begin looking for a match," she says. Doctors first test family members, as this will lower the chance of rejection or infection, before widening it to a worldwide search.

"I told them my mother was of Scottish stock with Danish ancestry and that my father was English."

It was at this point that events took an unexpected turn: "My medical team said that my DNA, which they were using to find me a bone-marrow match, didn't match my parent profile and was, in their words, 'odd'. This meant it would be more difficult to find a donor."

When Alison told her 96-year-old mother this, she could never have predicted her response. "I had hoped to carry this secret to my grave," her mother said. "Your father and I couldn't have children. You were donor-conceived." A man had donated sperm to Alison's parents.

"The shock was heart-stopping," says Alison. "I didn't blame my mother for keeping this secret, but at one stroke, I lost 50 per cent of who I thought I was. My whole sense of self disintegrated."

Alison also knew this meant that her hope of finding a close relative who could become a bone-marrow donor was halved. Her lack of knowledge about her true father could cost her life.

She asked her mother for details, but all her mother knew was that the donor was a student, and he was musical. As the law currently stands, Alison has no legal right to trace him. Before 1991, when the law was changed, sperm donors were granted anonymity if they so required. Furthermore, when Alison sought to establish whether any records existed from that time, she was told they had all been destroyed.

Looking closer to home for a match was unsuccessful; Alison's non-biological father had died when she was 17. She has two grown-up children, Anna and Jonathan, with her husband Ray, a photographer/lecturer, but neither were suitable.

In about 30 per cent of cases, a family member can offer a good match, but for 70 per cent, another donor will need to be found. Genetic make-up is incredibly varied and a match is made on inherited characteristics or "tissue types". The likelihood of finding a matching donor is much greater if the donor is from a similar ethnic background to the patient.

Although it is possible for a bone marrow match to be found anywhere, due to global migration, researchers are finding that pinning down their patient's racial heritage can speed up the process. At present, ethnicity can only be deduced by examining the DNA in the male line.

Gradually Alison began to piece together the story of her conception."My mother and father were helped at a central London practice run by a New Zealander called Reynold H Boyd, probably in Harley Street. But it seems that all Mr Boyd's records were thrown out after his death.

"Artificial insemination in the early part of the 20th century was not common, but it was going on, principally among the middle classes, who could afford it," says Alison. "My research has revealed that medical students may have fathered up to 300 children each, and made many more donations. Limits have now been imposed to cut down the chances of any siblings meeting in later life and marrying. One man can donate no more than 10 times."

So it seems Alison is not alone, and that many other people over the age of 50 may be the product of secret conceptions that we associate much more with the modern age of IVF.
Alison was hopeful in May, when a close bone-marrow donor was found in Germany. Could her father have been an Eastern European refugee from the Second World War, perhaps starting medical school in London? She began writing a blog, sharing what she felt about her search for her father, and she made contact with others in her position.

Even among others who have been donor conceived, there are many viewpoints, whether they were told by their parents, or kept in the dark, like Alison. "We seem to be a vociferous bunch," she says. "Some are bitter at what they have learnt; others are cynical."

Most want to end the hegemony of donor secrecy. Currently, children conceived after 1 May 2006 are allowed to apply to learn their father's name from the age of 18. This amendment has lead to claims that the number of sperm donors has fallen as men do not wish to be "found".

She acknowledges the argument that reversing the law might seem unfair on the sperm donors who contributed altruistically, but says, "There won't be armies of people tracing their fathers and demanding a share of inheritance. Most of us just need to know who we are.

"Most of the earliest sperm donors seem to have been students supplementing their income. These were bright young men, cheerily creating life – did they not think of the implications for the children they created?"

"You can't help thinking that anyone born via donor conception aged over 18 is part of some lost generation, which the medical profession and the government are hoping will die off without needing to be dealt with. Who could have foreseen that my mother would still be cogent at 96? Most of her peer group are dead, ill or suffering dementia. But I'm still here and I need this information – not just for mental closure, but to fight my cancer."

Alison is undergoing radiotherapy, and if the German bone-marrow donor is willing to help her, the transplant will take place next spring. Yet, she will continue to wonder if there is an 85-year-old man somewhere whose sperm donation helped a desperate couple to have a child in 1946. In which case, his daughter is hoping against hope she will one day find him. There is history to learn and grandchildren to meet. And a family secret that needs to be wiped out as completely as Alison's cancer.


Von said...

Shocking! She was a brave fighter.Salute.

damianhadams said...

RIP Allison, you are an inspiration.