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Our good friend Scott is up to his running tricks again!! Last year Scott completed the Sahara Marathon in aid of MCK – 250km in 5 days in the searing heat of the desert. An amazing feat that no-one could possibly want to beat. Or could they?

 

For 2012 Scott has set himself the incredible target of running from Bali to Jakarta. That is 1250km in 25 days – over a marathon a day. And he has chosen to raise money for two charities in Jakarta: the amazing YCAB, a charity that supports youth development through education, economic assistance and welfare creation for a better and sustainable future and Mary’s Cancer Kiddies.

 

We are honored, humbled and delighted that Scott has chosen MCK once again as one of the two beneficiary charities. From the bottom of our hearts, on behalf of the children, their families, the doctors and nurses – Thank you Scott.

 

Every rupiah that Scott raises will be spent on the medical treatment for sick and needy children, making their lives just that little bit more bearable, and bring hope and dignity to many families in need of our support.

 

Please help us to support Scott as he trains and prepares for his run in March 2012. Visit his website at www.runningbalitojakarta.com or follow him on Twitter @berlariterus.

 

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Read this inspiring article found today on Jakarta Globe about volunteers from the Children’s Yellow Ribbon Foundation:

How You Can Help Children With Cancer

 

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MCK would like say a big thank you to the Jakarta Free Spirit (JFS) road running club, which has once again this year given a generous donation to us from the proceeds of their run at Ragunan Zoo in Jakarta on 7 March. This year an impressive139 people took part in the races, 74 in the Aqua Half Marathon (21 kilometers) and the remainder in the 10 kilometer road race. We would also like to thank the run sponsors, Aqua & Mizone, Crown World Wide, Global Assistance & Healthcare, and Puma Sports, as well as the many individuals who gave extra donations on the day.

Aqua 21K & 10K road race organized by Jakarta Free Spirit road running club

Aqua 21K & 10K road race organized by Jakarta Free Spirit road running club

Aqua 21K & 10K road race organized by Jakarta Free Spirit road running club

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Last month Kay Ruygrok, in conjunction with the Shangri-la Hotel, organized a fundraising dinner featuring mussels that coincided with the launch of Shangri-la’s social welfare support program, for which MCK is their chosen charity. The event, which included a silent auction, proved very popular. Dr. Edi Tehuteru from Dharmais hospital’s children’s ward, who together with his wife were special guests at the event, gave a moving speech to the more than one hundred people who came to support our work. MCK would like to take this opportunity to again thank Kay and Shangri-la for their generosity and hard work in putting on the event, and also all those who came along.

Dr. Edi Tehuteru giving a speech

Mussels fundraising event at the Shangri-La Hotel, Jakarta

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As the holiday season and year end approaches, Mary’s Cancer Kiddies (MCK) volunteers would like to say a special thank you to our generous supporters and to wish you and your families all the very best for 2009. Thanks to your help, we have been able to continue our work with children suffering from cancer and infectious diseases, and prematurely born babies.

Children’s cancer ward, Dharmais Hospital

Working with children with cancer in any country is very grueling and in Indonesia, where children generally come in for treatment only after their cancer is well advanced and the prognosis is often consequently bleak, this is all the more true.

Sometimes, though, the least hopeful cases can surprise even the most experienced cancer specialists, as the case of six-year-old Siskawati demonstrates. When her family brought her in for treatment for a tumor on her retina a year ago her cancer was already stage IV, as the cancer had already spread to her brain, and her prognosis was very poor. Fortunately, even though her chances of survival were very slim, Siskawati’s family went ahead with the recommended treatment, including the removal of her eye and, after several cycles of chemotherapy, the cancer cells in her brain died.  Today, little Siskawati is doing well and she is in the process of being fitted with a prosthetic eye funded by MCK, thanks to two of our generous supporters.

Siskawati

MCK has also provided financial assistance to dozens of other children at Dharmais hospital. They include 14-year-old Rico, who was diagnosed with a brain tumour. Rico’s family had applied for financial assistance from the government insurance scheme for low income families, Askeskin, to cover the cost of his treatment, but the severe nature of his illness meant that treatment could not wait until the insurance cover  was  in  place.   The family sold their modest house in order to cover some of the treatment costs and MCK also provided assistance by paying for medicine and an MRI.

The onerous cost of treatment not only causes families to go into chronic debt, it can also lead them to decide not to continue with treatment, with usually devastating consequences. One family whose son, Alfonsus, was diagnosed with cancer nearly did just that. Having struggled to pay for six chemotherapy treatments they had no funds left to cover the cost of the four remaining cycles of chemotherapy needed, and staff at the hospital feared that they may give up and decide to stop the treatment as a result. Fortunately, MCK was able to step in and offer support and Alfonsus went on to complete his treatment.

Children’s cancer ward, Cipto Hospital

At Cipto hospital many families face the same dilemma as those at Dharmais and MCK therefore works closely with the doctors and nurses to provide assistance to those most in need. Among the children who have received MCK support at Cipto hospital in recent months are 6-year-old Zaenab and 15-month-old Zaki, both suffering from Leukaemia, and 6-year-old Vina, who has a tumor on her retina.

Zaenab

Zaki

Vina

Neonatal unit, Cipto hospital

In recent months, MCK has provided support for hundreds of premature babies being treated in the neonatal ward at Cipto hospital. For the poorest families the unanticipated costs associated with the medical care needed for a premature baby are often overwhelming. In the most desperate cases, parents abandon their newly born infants at the hospital because they are unable to pay the bills.

Infectious ward, Cipto hospital

MCK continues to provide financial assistance for children in the infectious ward, many of whom are also suffering from malnutrition. The photo below shows doctors and nurses from the ward.

Doctors and nurses at the infectious ward, Cipto Hospital

Hospital visits by MCK supporters

While MCK would not be able to do the work we do without the money generously provided by our donors, MCK is delighted that their kindness so often also extends to taking the time to visit the children and show their concern for them and their families.

JIS students

JIS students have continued to pay visits the children’s cancer ward at Dharmais to spend time with the children and, in April, two of them joined Dan Roberts of Clowns without Borders/ Hidung Merah Circus to entertain them.

British Women’s Association (BWA) volunteers have been regular visitors to Cipto hospital. The photo below shows two of them, Chris and Penny, preparing to give out to those undergoing treatment school bags, books and pencils donated by BIS students.

Chris and Penny

BWA volunteers

Izzi Pizza/Priscilla Hall Memorial Foundation

Don Hall (second from right), Julie (left)

For those of you who like pizza and would also like to contribute to the work of MCK, why not try a Priscilla pizza? For each one sold, Izzi Pizza donates Rp. 1,000 to the Priscilla Hall Memorial Foundation. The Foundation matches each Rp. 1,000 and the proceeds go to MCK. Don Hall, who runs the foundation set up in his daughter’s name, at the children’s cancer ward of Cipto, is pictured here with MCK volunteer, Julie, and two ward doctors.

In Memoriam

MCK volunteers were deeply saddened by the death in May of Nina, dedicated Dharmais hospital children’s cancer ward volunteer. She is much missed.

Nina

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Greetings from Mary’s Cancer Kiddies volunteers! In the year since our last newsletter we have continued to cover costs of treatment for children with cancer whose families are too poor to pay and where government insurance schemes are not filling the gap. Here we provide an update on developments and our plans. We hope you find this useful and welcome your comments.

Changes to government health insurance

There have been major changes in the assistance available to poor families with children suffering from cancer over the past year.

For a period, the vast majority of treatments and medicines for these children were covered by a government health insurance scheme, Askeskin. As a result, MCK focused on paying for one-off expenses that were not included in the scheme, such as MRIs, emergency treatments (blood transfusions, emergency operations, etc) and palliative care (primarily provision of pain relief).

Unfortunately, government miscalculations regarding the high level of demand for Askeskin, coupled with recent revelations of corruption in it implementation, have caused the system to break down. Hospital claims are outstanding, an increasing number of patient claims are not being covered, and the resolution to the problem is unclear.

Impact on families and MCK

The consequence of this is that poor families are once again facing enormous financial burdens in order to cover the cost of their children’s cancer treatment. Not surprisingly, the demand for MCK assistance has grown substantially and we are now covering a broader range of costs, including chemotherapy and radiotherapy treatments.

This demand is set to continue unless or until the problems related to the government insurance scheme is resolved. In the short term, this does not seem likely. Even if it were to happen, there would remain aspects of childhood cancer treatment uncovered by the scheme and the need among very poor families will remain for an alternative source of funding to meet the shortfall.

In response to requests from doctors at Cipto hospital, since June 2007 MCK has secured a sponsor who has been providing modest financial assistance to cover one-off costs of children suffering from infectious diseases and other ailments other then cancer. This includes illnesses such as tetanus, HIV, tuberculosis, acute diarrhea and malnutrition.  Costs per diagnoses or treatment are on average Rp 90.000 (€ 7). These patients are usually eligible for some government assistance but MCK covers costs pending completion of necessary paperwork.

One such patient for whom the prognosis of a full recovery is excellent is eight-year-old Feni who has typhoid.

Feni

Rumah Singgah Anak (Children’s Drop-In Centre)

Rumah Singgah Anak

MCK has also rented, renovated and furnished a house near to one of the hospitals for use by the families of children who are receiving treatment.

Changing lives

We realize that MCK’s assistance is only a tiny initiative that can help just a very limited number of children. However, for the families concerned the impact can be enormous.

One of the children of whom we are most proud is 12-year-old Abiyyu, He was diagnosed three years ago with Retinoblastoma (eye cancer), since when he has successfully completed his treatment and his cancer is in remission. It is not an exaggeration to say that without MCK his story would have been very different. In June 2004, halfway through Abiyyu’s treatment, his family had sold everything they owned and borrowed heavily to pay for his medical bills, and were preparing to take Abiyyu home because they could no longer cover the costs.

Hero, Abiyyu (centre) and Mum

MCK was able to step in and help to cover his treatment costs and MCK donations paid for a temporary glass eye that Abiyyu will use until he can have a permanent prosthetic eye implanted.

Today Abiyyu leads a normal life like other boys his age. He goes to school, is a keen football player, and loves Play Station. The photo, left, taken in July, shows the enormous progress Abiyyu has made as he stands proudly with his brother and mother.

Dharmais and Cipto Hospital, Jakarta

MCK has continued over the past year to concentrate our assistance in Jakarta where most cancer specialists and cancer hospitals are located, primarily in Dharmais Hospital, which houses the only special ward in the country for treating children with cancer, and Cipto Hospital.

Since January, MCK has provided funds to assist approximately 30 children. They include children as young as 18 months, through to children in their early teens. Many of the children live in the Greater Jakarta area, although others are referred to hospitals in the capital from all over Indonesia.

Jela

One of them is four-year old Jela, an only child from Tangerang whose father is a minibus driver. She has stage 4 reitinoblastoma cancer and was successfully operated on in early October to remove a tumor the size of a soccer ball. Just one day later she was able to play at the computer which previously was impossible due to the weight of the tumor on her face.  MCK has been assisting with the cost of her monthly chemotherapy treatment as well as costs of wound dressing to cover the tumor.

Eleven-year-old Ahmad Jaelani has advanced rhabdomyosarcoma, a soft tissue cancer. The eldest of three chldren, his father is a motorbike taxi driver and his mother is a housewife. Ahmad has been having chemotherapy treatment for the past year and this has successfully reduced the size of the tumour on his right eye. MCK has been assisting with the costs of his treatment since August.

Ahmad Jaelani

Jakarta Free Spirit Zoo Run

MCK arranged for forty-three patients and parents to join the fun at the annual Zoo Run in May. Our thanks to all those who helped make it such a memorable day.

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