In memory of Noot, 1993-2010

Noot with Wan Pen

"Every once and a while, we take in a gravely ill child who swiftly reminds us of what AIDS is really about. Earlier this year, we took in a 16 year old girl called Noot who had AIDS, TB and kidney failure. Her father had died of AIDS many years ago and her mother has HIV. Her family felt that they could not give her the specialist care she needed, and approached us reluctantly. Of course, we welcomed her at Sarnelli House with open arms.

Noot was very sick. She started continual ambulatory peritoneal dialysis (CAPD) for her renal failure, and had a catheter inserted in her abdomen, that was to be accessed four times a day, to act as her kidneys. CAPD is a lifelong procedure. The risk of infection and subsequent peritonitis was high. The doctors put in ports in her lower abdomen and our staff learned how to perform dialysis. They would use a bag of solution to cleanse her and they would carefully weigh the solution going in and coming out.

Noot coped with the indignities she suffered with great dignity and composure that was at odds with the thin, deteriorating body she occupied. Separated from her family and given over for care to strangers; being diagnosed with a disease that kills, and having her young body disfigured with a tube in her abdomen that she knew would stay with her for the rest of her life must have turned her world upside down. The dreams and the friends of her girlhood must have seemed like they were vanishing before her eyes. The constant coaxing, reasoning and desperate pleas for her to eat and take her tablets took little visible effect on her, but on her spirit they must have fallen like blows as she tried to get her body to do what everyone wanted it to do.

But she had good times as well. She settled into life at Sarnelli House and made a recovery of sorts. Her friendship with Wan Pen, another 16 year old with HIV, was strong. Wan Pen helped cared for her and slept in the same room with Noot and they gossiped, listened to the latest Thai pop songs and watched Thai soaps with her. On the few outings that Noot went on she and Wan Pen would put on their best clothes and Wan Pen would help Noot with her makeup and hair. Noot would emerge from her room proudly smiling and frail as a newborn foal, with Wan Pen beside her to help her climb into the van.

Taking tablets was one of the biggest challenges for Noot, She had to take up to six tablets four times a day and it was a constant battle to keep them down. Every strategy was used but nothing lasted to relieve her of the continuous drudgery and indignity of dry retching and vomiting. The need to start to treat Noot's HIV was becoming more paramount as the fear of further deterioration caused by AIDS could not be ruled out.

We managed to get her an appointment at Khon Kaen Hospital, 130 km away, to see the HIV specialist. She went and returned on the same day. On her way back, she wanted to eat Japanese food, and we took her to a big shopping mall where she enjoyed the taste in her mouth but didn't swallow any of it. By that evening she had taken her tablets with little problem. The next day, her last day, Noot wanted to see the farm where her mother, stepfather and stepsister were living and working. It is just down from Sarnelli House so the family could be near Noot. Fr Shea had given them a house and employed them to take care of the pigs, chickens and grow vegetables. Noot visited them and the day seemed to be a turning point, she was more interactive and able to eat. The next morning she was dead.

When we got there the older girls who were Noot's friends and the staff were all sobbing, and Noot was still warm. Little folk, all infected with AIDS, sat at a distance and watched everything unfold quietly. Her relatives came from Sophisai to take her home for a Buddhist funeral.

At least we tried with what we had, to give Noot a better life. But for Noot it wasn't possible. But though we were shocked at her sudden death we also felt a sense of relief for her and for ourselves. We would not have to battle against the slow and horrible decline caused by AIDS, Noot was free and whole now, and she had shared with us her essential self: her dignity, her composure, her stubbornness and her sweetness, and this is what we will carry with us in our hearts.

We know she is in heaven, and is now big sister to those wee ones of ours who died of AIDS years ago, like Dutch Michael, Nam Phon, Kirk, Knock and Josie. But, that doesn't make it easy."


Sarnelli House is Thai Children's Trust project for young people with AIDS/HIV, in Nong Kai, Thailand

For more information see: www.thaichildrenstrust.org.uk/projects/Nong%20Khai