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The Star Of “IN MY GENES” Succumbs To Skin Cancer

Agnes and Lupita Nyong'o

February, Thursday 16th 2012  – Agnes Manzi Muthakye, the blind woman with albinism starring in Lupita Nyong’o’s award winning film, In My Genes succumbed to skin cancer on Monday, February 13, 2012 at Kenyatta National Hospital at 10 p.m.

Agnes, the 52 year old woman from Musosia village in Mwingi District was no ordinary person. Totally blinded by skin cancer, she remained the breadwinner of her family of seven children and her husband, John Kabiru Kariuki, until her death. In her blind state she had overcome all odds against her to earn a living by meticulously weaving ciondos and knitting sweaters.

She washed clothes, maintained her household, provided for her children’s education and cooked for her family.

She was a powerful woman with a very positive and powerful spirit. She was always happy, refusing to lead a life of sorrow, disarming you with her sense of humour and charm as soon as you met her.

Agnes was born on February 25, 1960. She went to school and completed her form four studies which she attributed to the fact that she was born with albinism.

She considered herself fortunate in this regard since her sisters with normal pigmentation were married early and did not complete their studies. In 1984, she lost her first eye and believed it was damaged due to a beating she had received from her father. She met the father of her children, a widower in 1987.

Between 1994 and 1996, she underwent radiotherapy treatment, which she had to discontinue due to lack of funds. In 2003, her second eye was affected and had to be removed. Initially traumatized by the news, she quickly adjusted to her new situation when she was encouraged by the wife of a 1998 Nairobi bomb blast victim who was also blinded.

She continued to weave her ciondos and do her knitting for a living.

It was not until 2007, when Lupita introduced Agnes to Dr Fatma Abdallah, an oncologist at Kenyatta National Hospital, that Agnes knew that she had cancer. She said, “Dr. Abdallah explained to me that I had cancer.

She told me that I had Basal Cell Carcinoma and that it had started in my eye and had now spread to my face, neck and chest. It was the first time ever that someone had explained to me my condition and talked to me like an adult.”

Agnes, who lived near Lenana School, continued to attend clinic at Kenyatta and Mbagathi Hospitals even as her condition deteriorated. She was present at the launch of the Africa Cancer Foundation on July 12, 2011, where she moved the audience with her story.

She was admitted into Kenyatta National Hospital on Saturday February 11, 2012 in serious condition. She had borne her excruciating pain with unimaginable courage and dignity. She passed away on Monday night, at 10p.m. She leaves behind her husband, 7 children and 4 grandchildren.

Her youngest son, Njenga is only 9 years old and goes to Nelson Mandela Primary school, at Pathway Dagoretti Corner.

Lupita Nyong’o, the producer of the first ever film to highlight the plight of people with albinism, met Agnes in mid 2007 during her research for her undergraduate thesis at Hampshire College in Massachusetts, USA.

She was immediately blown away by the personality of Agnes, and went on to weave the story of In My Genes around the life and trials of Agnes.

In My Genes was launched in Nairobi on Thursday May 28, 2009, by Mrs. Ida Odinga and put the cause of people with albinism squarely on the map, long before the infamous Tanzanian killings of people with albinism came to the limelight.

Messages of condolences have been pouring in since the albinism fraternity and those who knew Agnes learnt of her sad demise.

“Ever since Lupita introduced her to the family we have always felt her warmth and strong personality under difficult health challenges.”

-Hon. Prof. P. Anyang’ Nyong’o,

Minister of Medical Services &

Patron of Albinism Society of Kenya

The Chairman of Albinism Society of Kenya (ASK), Alex Munyere said that he was touched by the way Hon. Prof Nyong’o and his family have embraced albinism and in particular Agnes.

As the Albinism Society of Kenya mourns Agnes, another person with albinism, Christopher Obongita passed on yesterday of the same cancer. Like Agnes, the cancer had eaten most of his head. “We are in tears and do not know who is the next on the bench.”Alex Munyere said.

“Agnes shall be remembered for her courage in braving skin cancer. She spoke with boldness and clarity, telling our story as persons with albinism. She reminded us that skin cancer, though scary and crippling, was neither inevitable nor natural. She soldiered on even when her face was disfigured. She never wavered in seeking social justice for persons with albinism. Immortalised by In My Genes, our life stories are interwoven with hers and though she has gone before us, the battle is still on.

-Isaac Mwaura, National Coordinator of ASK

 “Agnes was a study in courage and determination. May her passing on, and that of many more of our colleagues be a wakeup call us for to advocate even harder to reduce the factors that aggravate the suffering of those for whom access to medical services in such conditions is just but a dream. –Maina Mugo, ASK.

A heartbroken Lupita Nyong’o, currently completing her Masters in Theatre programme at Yale University, USA said “Agnes was a force to reckon with. She meant so much to me and I miss her dearly. She shared her story with me so that I could share it with the world and she did so with selflessness, passion and BIG love. She taught me that love is our birthright, to have and to give; and that forgiveness and thankfulness are our duty in order to have access to love. Agnes lived her life fully – she was not a person of moderation: when she laughed it was loud and when she cried is was deep. Despite so many unbearable odds she found and expressed joy, good humor, and faith that passed my understanding. I am a better person because I knew her. She may have had cancer but cancer NEVER had her.”

May the Lord rest her soul in eternal peace.

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