Yayasan Rumah Rachel ('Rachel House')

Rachel House was registered in November 2006 as a charitable organization under the name of Yayasan Rumah Rachel in Indonesia with the purpose of providing palliative care to children from poor and needy families living with life-threatening diseases, such as cancer and HIV. It is the first pediatric palliative care service in Indonesia, providing pain and symptom management for children in the final stages of their illness at free of charge. Without the service, many of these children from poor families would spend their last days in horrific pain without medical assistance. Rachel House was founded in the hope that no child would ever have to die in pain, without love and care. It is bu...
Jul 12, 2016

"Why is the cat so big, Uncle Dadan?"

Teguh & Dadan waiting at the doctor
Teguh & Dadan waiting at the doctor's clinic

Have you ever wondered what it is like for Rachel House’s nurses caring for children living with life-threatening illnesses in and around the metropolitan city of Jakarta? Then read this story by Dadan, one of Rachel House’s nurses, and his journey in bringing love and care to Teguh, a five-year old boy living with HIV.

 

“The first time I visited Teguh at his home, he refused to speak, or even look at me. But of course I did not give up. I asked him to show me some of his stuffed animals and played with him until, eventually, he came around and allowed me to examine him.

Because Teguh’s immune system was severely compromised by the HIV infection, he constantly suffered from conditions such as diarrhea, fever, and coughing. He was also malnourished, and was often too weak to play as other children do. As his nurse, I made sure that, one by one, Teguh’s symptoms were managed and that he was comfortable at home. It was not easy, because Teguh had not started taking HIV medications. These medications, often called ARV or antiretroviral, work by keeping the HIV virus level in the body low. This in turn helps the body’s immune system to recover and function as it should. However, for the ARV medications to be effective, they have to be taken in a discipline manner, and that means every day at the exact same time. If that does not happen, the virus will become resistant to the medication. Unfortunately for Teguh, the doctors would not prescribe the ARV medication for him because there was no one at home who could administer and monitor his medication.

Teguh’s mother had died when he was three years old and his father had abandoned him. He was living with his uncle, who was busy working and did not pay a lot of attention to him. Day in day out, Teguh spent most of his time alone in the house. Every now and then his grandfather, a garbage collector, would visit him after work, bringing him something to eat. But mostly, Teguh just looked after himself.

As time passed, I came to be more than a nurse to Teguh. I became a friend. I would sometimes bring him his favourite cartoons, such as BoBoiBoy, Thomas the Tank Engine, and Power Rangers. Together with other Rachel House volunteers, we would keep him company and watch the cartoons.

Every time I was getting ready to leave, Teguh would get upset and angrily throw his car toy at me. For a child who was always on his own and never felt loved, he must have been very happy that there was someone in his life who spend time with him and played with him.

 

One day, Teguh told me that he wanted to see a real tiger. I realized after some discussion that he had never gone for an outing in his entire life! So we made plans to go to the zoo together, which got him really excited.

On the day itself, he woke up very early, showered, got dressed, and by 6 am, he was all ready to go! Together with a few of Rachel House’s volunteers, we drove to Taman Safari Zoo in Bogor. As it was a Saturday, the traffic was congested but not once did Teguh complain. It was the happiest I’ve ever seen him, and certainly the most talkative and energetic:

“What kind of car is that?”

“Are we there yet?”

“How long before we get there?”

The car was filled with joy and laughter.

It was a big day and a long journey to the zoo and back, but when I saw the sheer wonder and delight on Teguh’s face, I knew it was all worth it. He marveled at everything he saw. When he finally saw the tiger, he asked, “Uncle Dadan, why is the cat so big?!”

Teguh passed away less than two weeks after the trip to the zoo. A few of us went to his funeral to see him buried alongside his mother. The sounds of his laughter and the memory of the joy on his face left a huge imprint in my heart, and in the hearts of many at Rachel House. Although I am sad that he had lived such a short life, I am comforted by the knowledge that we had brought love and happiness to the brief time he was under our care – and this gives me courage and determination to continue my work as a pediatric palliative care nurse at Rachel House.”

Teguh at the Aquarium
Teguh at the Aquarium
Teguh on his 1st & last trip to the zoo
Teguh on his 1st & last trip to the zoo
Apr 14, 2016

Everyday Heroes trained in bringing care to all

CNPC trained volunteers in action
CNPC trained volunteers in action

While caring for children living with life-limiting conditions remain Rachel House's core mission, we realised that we can extend our reach to many more people in need by rallying the support of community members ("kader"). And hence, in 2013 we launched a community-based program named Community Network in Palliative Care ("CNPC") that provides basic palliative care training to community members and primary health professionals; where collaboration is cultivated and forged between them to provide care and assistance to those who are ill in their community --> thereby making sure that no one needs to live in pain, unloved and without care.

Watch these amazing everyday heroes in action in this beautifully and lovingly shot movie by Anatman Pictures who gifted their time and skills to bring alive stories too often hidden and untold.

Links:

Jan 7, 2016

2015 - Collaboration towards Health for All

2015 - Impact
2015 - Impact

Making Palliative Care Available and Accessible for All

2015 has been a fabulous year of collaborative impact. After 9 years of beating the palliative care drums alone, the year finally saw many in the medical industry in Indonesia coming to embrace the concept. This phenomena is due in no small part to the recognition of the unmet needs of the quickly rising number of people living with chronic diseases. A problem caused by the insufficient number of trained medical professionals in Indonesia, which in turn brings to question the ability of the recently established Universal Health Coverage to adequately deliver health care for all.

Rising to the Challenge: To Deliver a World-Class Palliative Care

Working in collaboration with Singapore International Foundation (“SIF”), and Cancer Foundation (YKI DKI), a 3-year palliative care training program was launched in February for medical professionals from 12 public hospitals. The aim is to ensure the availability of palliative care for all in the public hospital system.

At the primary health setting where many remains without access to healthcare, we intensified our efforts to mobilise and train community volunteers to provide care and assistance for those who are sick at home. Community Network in Palliative Care (CNPC) Program forges collaboration between trained medical professionals and volunteers to help deliver care to those in need.

Recognising the urgent need for trained palliative care nurses, we launched the  Clinic-in-a-Box program to equip nurses with home-based palliative care skills. The maiden 6-week course was launched in October this year in collaboration with Padjadjaran University in Bandung.

Gratefulness

Our journey to establish a palliative care ecosystem in Indonesia has been paved with awesome volunteers and collaborative partners, generous and faithful supporters and donors. We are grateful to all whose continued support has helped bring us closer to our vision that no child should ever have to die in pain. Thank you. 

 

donate now:

An anonymous donor will match all new monthly recurring donations, but only if 75% of donors upgrade to a recurring donation today.
Terms and conditions apply.
Make a monthly recurring donation on your credit card. You can cancel at any time.
Make a donation in honor or memory of:
What kind of card would you like to send?
How much would you like to donate?
  • $25
    give
  • $100
    give
  • $400
    give
  • $25
    each month
    give
  • $100
    each month
    give
  • $400
    each month
    give
  • $
    give
gift Make this donation a gift, in honor of, or in memory of someone?
WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.