Pediatric AIDS Treatment Support

Promoting healthy childhoods through community partnerships
Mar 22, 2016

PATS volunteer WANG Yi traveled to Fuyang 01/2016

Zhen Zhen, front and center with glasses
Zhen Zhen, front and center with glasses

Dear Global Giving Friends,

PATS has been fortunate to have a steady stream of dedicated volunteers willing to travel to Anhui, China to work with the children in the program. In December 2015 and January 2016 Yi Wang, a Hampshire College student, traveled to Fuyang, China to work with PATS children. Yi spent a lot of time with each child, took many pictures, taught them arts and crafts, celebrated the New Year, visited with many of their families, and listened to stories about their lives. Yi has written the update below about one of the children she met, Zhenzhen, who is 10 years old, and in 5th grade. We profiled ZhenZhen in a previous update almost a year ago and are excited to let you know how she is doing today. As you may remember, ZhenZhen loves to dance and that is what she most looks forward to when she comes to PATS activities during the weekend.

From Yi Wang, PATS Volunteer

ZhenZhen: A love of dancing and a compassionate heart

“Zhenzhen is a sweet 10-year-old girl. She listened to me very carefully whenever I spoke, and she made me feel respected. Probably due to her good manners, many volunteers speak very highly of her, from her easygoing personality to her strong desire to learn. It is well known that Zhenzhen is a talented dancer. She is such a natural when it comes to dance and is so good at improvising and keeping rhythm. In her daily life, she is often introverted and quiet and acts as a considerate listener, sitting for long periods of time very attentive and patient. Yet on the stage, dancing is her trigger to become a completely different person. Her eyes shine whenever she speaks of it, and her hands tap on her lap when she hears familiar music. I have no doubt in her to make the whole world into her ballroom in the future.

Dancing is something that can transport ZhenZhen to a place where she can be carefree and not worry about the challenges she faces on a daily basis as a result of her HIV status. Someone told a parent of one of her classmates about Zhenzhen’s HIV status last week and word quickly got out that she was HIV-positive. Some boys in her class laughed at her and called her names. Yet she seems to be able to deal with this matter in a very mature way despite her young age. She explained that she is very lucky to have Yue and Zihao (two other PATS kids who live with her in the House of Love) in the same class with her, so they can support each other in the face of teasing and ever present stigma. She is very strong and brave.

 

Yi recalls:

 

“When I heard of this teasing I felt very sorry and asked her how I can help her. Surprisingly, she gave me a big smile and comforted me instead. You can imagine how impressed I am by this little girl. The strength and spirit she has in her body to dance is matched by the strength and spirit in her heart to show compassion to others, even those who are unkind to her. The compassion she showed for other people is what I needed to learn from her. For me, knowing Zhenzhen is such a rewarding experience which helps me with my own self-discovery. Zhenzhen is a great teacher of mine, and I’m so lucky to know her.”

ZhenZhen with new headbands brought by Wang Yi
ZhenZhen with new headbands brought by Wang Yi
Dec 22, 2015

Getting ARV Drugs to the Kids Who Need them Most

When Kay and Nan Nan first met in 11/2013
When Kay and Nan Nan first met in 11/2013

When traveling to Fuyang, Anhui, China for work 12 years ago, Professor Kay Johnson- PATS co-founder- met a 12 year old girl named Nan Nan, who was HIV-positive and extremely sick. It was disheartening to learn that there were no medications for pediatric HIV/AIDS in China at that time (when they were available elsewhere in the world) and there was nothing the local CDC in China could do to help her. Like countless HIV-positive children before her in China, she would die.  ‘You don’t just walk away from a very sick child’ Kay reflects.

Trying to find help to treat Nan Nan, Kay rolled up her sleeves and extensively reached out to her network of doctors, friends, colleagues, and friends’ friends. One day, a colleague introduced Kay to AID for AIDS (AFA, https://aidforaids.org/), a nonprofit dedicated to improving the lives of people affected by HIV, headquartered in New York. Kay got an email from them saying they could help with pediatric medications for Nan Nan: “It’s not easy but we will try” she remembers them saying.   AFA has high requirements before donating medications and they needed a doctor’s prescription and lab tests before they could send them out.  It was a challenge to meet these requirements, but Kay was committed to giving Nan Nan a chance to survive.

The first hurdle was that there was no pediatric AIDS doctor in Fuyang or any city close by who could write the required prescription. There was one doctor in Beijing who had been trained by Harvard doctors. On New Year’s Eve of 2004, when people traditionally gathered with families to celebrate the New Year over meals and toasts, the Director of PATS’ local partner AOS took Nan Nan on a quiet empty train and went to Beijing. Nan Nan was 13 years old then, but due to sickness, malnutrition and lack of care, she was so small she looked like a 7 or 8 year old. The doctor confirmed that Nan Nan had full blown AIDS and provided the prescription to AFA. Very soon AFA sent out the pediatric medication to Nan Nan.  Kay recalls: “without intervention, she wouldn’t have survived that winter.”  Not only did Nan Nan survive but she thrived. Thanks to life saving medication and the supports provided by the PATS program, her CD4 count increased until the HIV virus was undetectable and she was able to attend school, study painting and eventually marry. Today she is the proud mother of a toddler who is HIV-free!

Though pediatric ARV medication is now available in China for HIV-positive children, changing the prescription could jeopardize the health of Nan Nan, whose body has responded so well to her imported drug regimen.  Consequently Aid for AIDS has continued to faithfully send regular packages with the medication she needs to maintain control of her illness. PATS is extremely grateful to partners such as AID for AIDS who allow us to provide the medication needed by Nan Nan and others to not just survive but thrive.

Kay and her collegues in Fuyang
Kay and her collegues in Fuyang
Kay visiting families
Kay visiting families
Kay
Kay
Nan Nan is now a mother of a HIV-Free baby
Nan Nan is now a mother of a HIV-Free baby
Sep 23, 2015

Summer in Beijing

Yao
Yao

For the last decade, PATS local partner AOS has brought many of the PATS children to Beijing each summer for "camp". It is a great opportunity for the children to see something outside of their small rural town and see important historical and cultural sites. The children look forward to this trip all year and it is the only opportunity most have to travel anywhere.

Many local university students volunteering with the Red Cross signed up to help with the summer camp and were on hand to engage with the children, serving as tour guides. The kids called them “GeGe” and “Jiejie” (Elder Brothers and Sisters) and had a very fun week in their company.

They visited the Beijing Zoo where they said hi to the pandas and the Science and Technology museum where they participated in some very cool hands-on scientific exhibits.  They also took some art classes and toured many scenic and historical places in Beijing where they loved getting photos to bring back to show friends and family. 

The highlight of the trip was meeting Yao Ming! When the kids first met Yao in person, they were so surprised that 'He was so tall!' Yao played basketball with the kids, and put some kids up on his shoulders so they could shoot baskets. They also met with Peng Liyuan (China’s 1st lady)- which was an incredible honor.

As you can imagine the kids had a blast on the trip and for a short time could focus on the fun of childhood rather than on the heavy and often difficult day-to-day existence they live back home. Thank you for your support that allows us to provide our kids not only with critical medical and educational support, but also from time-to-time with a chance to experience childhood.

Below are some group pictures. We hope you enjoy them!

 

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