Fighting for children with HIV

The Standard (Kenya) | August 23, 2012

Foundation Ambassador Florence Ngobeni-Allen was featured in this interview with The Standard, a Kenyan news outlet.

Florence Ngobeni –Allen, 39, has been through the ringer, cried many tears and suffered through every woman’s worst nightmare — watching her baby die. But she is also a soldier who has managed to emerge from the pain cocoon stronger than ever. She spoke to Shirley Genga.

Like many strong mothers, Florence Ngobeni-Allen’s heart-wrenching story is that of pain, agony and, gladly, triumph. She has taken her pain and turned it into an extraordinary drive for a positive course; ensuring women don’t have to helplessly watch their children die of Aids.

Florence is a HIV counsellor, activist and consultant, and has been the face and ambassador of the Elizabeth Glaser Paediatric Aids Foundation for the last 14 years. 

While others like her choose to hide behind the shadows of HIV stigma, Florence has chosen to come out and use her story as a weapon to fight for women like her.

“I have chosen to open up my life in order to create awareness and help campaign for better health programmes for women. I lost my first child to Aids and it is a fate I would not wish on anyone.

“It is my life’s purpose to give a voice to the hundreds of thousands of women and children living with HIV. My dream is for mothers around the world to have access to the tools and the support they need to keep their children healthy and HIV-free,” says Florence passionately.

Florence’s presence was strongly felt at the just concluded Aids conference in Washington that took place during the week of July 22-27. She was at the forefront sharing her story and campaigning for the involvement of HIV positive women in policy and decision making when designing HIV programmes.

As an ambassador and activist for paediatric HIV, Florence has shared the stage with renowned leaders and celebrities like former presidents George W Bush and Bill Clinton and celebrity musicians Bono and Alicia Keys. She has been to Capitol Hill to give her story and to educate policy makers on paediatric HIV; something she would never have imagined possible especially because she comes from a humble background.

Florence grew up in Alexandria Township in South Africa.

“I’m the first born in my family of seven children. After my mother had me she got married and left me with my grandmother, who raised me,” she says.

Florence was forced to grow up early and in her teens, did domestic work to earn money.

Pain of loss

“After high school, I was unable to further my education. I got married in 1995 after I found out I was pregnant,” explains Florence.

She then had her baby girl Nomthunzi in 1996, but a few weeks later her husband grew ill and passed away after three months.

“It was one of the most trying moments for me. I was a widow and to make things worse, his family blamed me for his death.  I was not even able to attend his funeral. Then a few weeks later my daughter began getting sick,” remembers Florence.

When she took her daughter to hospital, she received the worst news a mother can hear.

“I learnt that I was HIV-positive, and that I had passed it to my baby. I did not even have time to digest the information because my baby was so sickly thereafter and thus I was in and out of hospital for the next few months. After six months my little angel died of opportunistic infections.”

Florence was only 23 years when her world came tumbling down. She was heartbroken, bitter and also angry with her late husband for not disclosing his HIV status to her.
“I promised myself that I would never hide my status from my friends and family. The first person I told was my grandmother; she told me she did not know what Aids was, but that she still loved me. I’m who I am today because of the unconditional love she showed me,” says Florence.

When Florence disclosed her status to other family and friends, not everyone was as accepting because of the ignorance that generally surrounds HIV.

“I decided very early that I was not going to let the stigma associated with living with the virus to stand in my way. So I refused to let those who did not understand my condition to put me down,” she says.

Around that time, a friend of hers, Andrea A Crouyken, introduced her to Prof Glenda Grey.

“Prof Glenda was God sent. She really helped me understand my condition and gave me the courage and hope to live another day. She believed in me, saw something in me and trained me to be a counsellor. She later employed me as a counsellor at Chris-Bagwamath hospital in Soweto,” remembers Florence.

Sorry reality

Even so, her first years as a counsellor were difficult.

“Every day I was surrounded by babies who were sick and mothers who were hopeless yet no one was talking for them. It was during this time that I decided to fight for these mothers. I decided to be their voice and to wake up my community and the world to the harsh realities of so many mothers facing HIV and Aids.

“Today, because of the work of organisations like the Elizabeth Glaser Paediatric Aids Foundation and other like-minded organisations, access to services to prevent mother-to-child transmission (PMTCT) of HIV have improved. The risk that a mother passes HIV on to her baby can now be reduced,” she explains.

Apart from being a counsellor and an ambassador for Elizabeth Glaser Paediatric AIDS Foundation, Florence works as a consultant?and trainer on sexually reproductive rights. She continues to work with other organisations that deal with accessibility and availability of healthcare to women and young girls.

Florence also has a health blog and is in the process of registering an NGO — to be called Nomthunzi after her late daughter.?

Family
Florence met her husband when she was working in Soweto as a counsellor and he had gone to South Africa as a volunteer.

“When he began pursuing me, the first thing I asked him was if he knew that I was HIV positive. He told me he knew and had been following my story,” she says with a smile on her face.
“Despite my condition,” she says,  “he still wanted to date me. After dating for a while we got married in 2005. After consulting our doctor I got pregnant and we had our son in 2006.”
She says that while she was excited about her pregnancy, the nine months turned out to be crippling.

“Everyone hopes that their baby will be born healthy. I was praying and hoping my baby would be HIV free. After my son Alex was born on July 25, in 2006, it took me a while to bond with him because I was so scared that something would go wrong,” says Florence adding, “Even though he was tested and found negative, I was still scared. But after he turned six months I was finally able to accept the miracle.”

Florence also has another son, Kulani, who is 18 months old.

When I ask her what she loves most about her husband, she explains: “My husband is very kind and loving and the reason why I’m the woman I am today. To think that he chose me out of all the other women and I’m HIV positive is very moving to me. He has brought a lot of happiness to my life.”

Florence believes that if you involve a woman, engage her, educate her and support her, then you give her wings to do anything.

“Look at my life; I’m living proof that anyone can make a difference,” she says.

Florence hopes to go back to school to get a degree and to continue being healthy. She plans to live long enough to see her grandchildren.

About Florence Ngogeni-Allen