Profile of a cairn care-giver

Ruapehu Bulletin, Volume 13, Issue 590, 13 June 1995, Page 7

Profile of a cairn care-giver

By

Ann

vlncent

Kerry Parkes is a slight young woman with large expressive eyes and a wry sense of humour. She is efficient, cairn, composed. She has two young children and runs a cleaning business with her husband, Phillip. She enjoys mail-order catalogues, knitting, and Shortland Street. You may think that this could describe many young New Zealand mothers. What makes Kerry different is that she is the only mother in New Zealand who has a child with the degenerative neurological condition Late Infantile Battens Disease. Since 1991 her daughter Jenna has becomeincreasinglyill. Sixmonths after her third birthday, Jenna began having seizures and blackouts. Jenna was diagnosed with epilepsy and later, in 1992, with a very specific type of epilepsy, Lennox-Gastaut syndrome. However, Kerry was not happy with Jenna' s response to treatment and sought more information — another opinion. Finally, in 1993, after her fifth birthday, she was diagnosed as having Battens disease. One of the most difficult diseases to diagnose, Battens is often confused with epilepsy or mental retardation in the early stages. In those long years since 1991, Kerry has run the whole gamut ef medical emergencies, examinations, interventions, operations and medications. She has met neurologists, paediatricians, GP's, interns, house surgeons, students and nurses of every age, stage and specialisation. From their home in Ohakune to clinics, to doctors' surgeries, to hospital, the family have travelled miles, sometimes in the family car, sometimes in the ambulance, usually in urgent haste. Jenna may have stopped breathing, pulled her feeding tube out, or be burning with fever. Her condition is such that her symptoms are extreme, life threatening, and changeable. Kerry has realised over the years that the family are the decisionmakers who must manage the care and treatment that Jenna gets, because there is no known cure or treatment for this condition. Kerry' s conversations are sprinkled with the names of drugs, she holds her own with

medical persortnel, who acknowledge that she is the person most able to understand Jenna' s condition and her reactions to new treatments. Kerry has sat for hours, questioning, learning, arguing, pleading, badgering to get the best support and treatment for her now-seven year old daughter. Much of the support now in place for Jenna is due in no small part to this slight woman who insists and persists, until professional people, both medical and educational, find resources to meet the very special needs Jenna has. Kerry is a one woman pressure group. She rings a private researcher in the United States to hear the latest developments in care and treatment for Battens. She applies what she learns to Jenna's needs and shares her knowledge with others. She has often been able to give valuable information to the doctors here. A detailed diary of all the incidents and treatments has been an invaluable aid for the family. She has learned she must make split-second decisions and remain clear and assertive in sometimes highly emotional situations. Even after nights » of d;sturbed sleep, when Jenna may have been in pain, had a seizure, or vomited, Kerry is available and alert next morning, to get five year old Joshua off to school, to take care of business with Phillip, to tidy her house and to bath and change Jenna. She brushes her daughter' s golden hair and ties it with a ribbon so that she too is fresh and glowing pink for the new day. Many people visit the small house near the end of a metal road and the face and the voice of the young mother are always the same. Warm, welcoming, bright and clear. To the outside observer it seems that nothing is a problem for Kerry. She is able to do this because she is focussed. She has a clear, true goal — quality of life for Jenna. She has found out as much as she can about Jenna's condition. She follows up every new lead or possibility as soon as she is able. She knows she is doing the best she knows how for Jenna. She acknowledges the gifts that Jenna has given her. "She is my best teacher," claims Kerry.