By Judith Johnson

U.K.Tour Monday Nov 3rd - Fri 19th December 2008

Ageing DJ TRACEY has two children: RIVER (RIV) and PHOENIX (PHEE). RIV is in his early twenties. Conceived during an Ecstasy fuelled night in the late 1980s, RIV has grown up never knowing the ‘beautiful stranger’ his mother chose that night. In 1994, TRACEY, in her early thirties, gets broody again. This time her selection process involves a sperm bank rather than an actual person; this time she wants brains. A donor is chosen from a private sperm bank, a very talented violinist who mountain climbs in his spare time. 9 months later, Phoenix (PHEE) is born.

PHEE grows up somewhat precocious. Guilty for the rather neglectful way she brought up RIV (dragging him round raves in a moses basket, living in squats, forgetting to take him to school) TRACEY has slightly overdone it with her daughter.  PHEE has been hothoused since the womb and  can already speak fluent French, dazzles everyone with her maths skills,  and read the latest Harry Potter book in one day. Sadly, she
hasn’t inherited her donor father’s attributes. Her violin playing is lamentable, and she can barely make it to the kitchen, let alone climb any mountains. TRACEY is still a ‘free spirit’ though, so RIVER does the cooking, cleaning and generally holding the household together.

In 2006, TRACEY’s has a shortlived fling with a Christian guy. The relationship (and TRACEYs interest in church) soon grinds to a halt. But in the meantime, RIVER has met CASSIE, another churchgoer. Despite CASSIE’s deep faith and RIVER’s unwillingness to convert to Chritianity, the two fall madly in love.

Soon after, PHEE meets Dr. Khaled, a Scientist specialising in stem cell research, at a lecture for Gifted and Talented children. She develops a crush on Dr. Khaled, and becomes absolutely fascinated by his research. She cruises the Internet, addictively searching for more information about stem cells.

Despite their unconventionality, our family rubs along happily enough, until now. Now TRACEY’s hands seem to have developed a life of their own.  Uncontrollable muscular movements are making it difficult for her to spin the vinyl at all and she is having unsettling mood  swings (even more than usual).  Could it be that all those drugs she used to take
are finally taking their toll? PHEE does some Internet research and begins to wonder if her Mum has some form of neurodegenerative disease. TRACEY is adamant that this is not so. But then she starts getting more and more clumsy and keeps stumbling for no good reason.  Eventually, she is diagnosed with Huntington’s Disease.

TRACEY was adopted, so she never knew, but with her diagnosis the whole family is presented with a ticking time bomb. Both RIVER and PHEE could have it too. Huntington’s is a life shattering, so far incurable disease. The brain, body and emotional life of sufferers deteriorate slowly until they are no longer able to control movement or mood or speech. Everyone is shell shocked.  The burning question is, do PHEE and RIVER  want to take the test and find out if they will have it too?  If the answer is yes, they will live the rest of their lives knowing what is waiting for them. They are witnessing TRACEY’s deteriorating condition on a day to day basis. They know what’s in store. If they do have Huntington’s, they could also pass it on to their children.

PHEE scours the Internet for information, inundates Dr. Khaled with emails, looks up prominent Huntington’s experts, reads anything she can get her hands on. She soon discovers that stem cell research provides future hope to sufferers of many diseases and conditions, not just Huntingtons. She is amazed by the different possibilities being thrown up. Pioneering work to create embryos from animal eggs, stem cells from amniotic fluid, stem cells being taken from the thighs of people with heart disease and injected into their hearts to mend the damage. Perhaps one day it will even be possible to grow new organs and prolong human life far beyond present life expectancies!

CASSIE and RIVER have been trying for a baby. Should they go ahead with their plans to start a family? They could just take their chances (in CASSIE’s terms, accept God’s will). Or they could go for Preimplantation Genetic Diagnosis, which will allow them to screen out embryos with Huntington’s, if RIV has the disease. CASSIE finds this very difficult, her Faith teaches her that all life is a gift from God. A baby with potential for Huntington’s is just as important as a baby without. Major pressure is put on the young relationship, and is complicated further by PHEE waxing lyrical about the use of stem cells.

All these tension lead to arguments. CASSIE feels that Scientists working with embryonic stem cells are Playing God.  PHEE calls her stupid, doesn’t she understand that these are just tiny little blobs with no feelings? RIVER tries to make a compromise. Maybe God, if there is a God, created scientists to do just this kind of work?  TRACEY is with CASSIE, despite not being religious, she does believe in the sanctity of life, and does not think embryonic stem cells should be used. 

Judith Johnson
Summer 2007

	For further information about this project, email our Tour Producer David Jackson