Fund Raising Gala Dinner Rare Disease Day 2019

Graha Dirgantara Ballroom, East Jakarta, is a place of the closing event celebrating world rare disease day 2019. The event, which was held on Thursday, February 28th, 2019, was a collaboration between Yayasan MPS dan Penyakit Langka Indonesia and Pusat Pelayanan Penyakit Langka RSUPN Cipto Mangunkusumo. Bringing the theme 'Bridging Health and Social Care', this event was successfully attended by various groups such as the doctors, patients, patient families, and etc. It was held to help the children with rare diseases. 'Hadapi dengan Senyuman’ opening song sung by Putri, one of the great children of the Yayasan MPS dan Penyakit Langka Indonesia, successfully bewitched the invited guests. The event was amazing and emotional. The children were able to give a different color for the the event. Some children who come were able to run, but some of them  also come in their parents' arms or are pushed in wheelchairs.


Peni Utami, chairperson of Yayasan MPS dan Penyakit Langka Indonesia expressed her deepest gratitude for the invited guests attending this event. Peni also asked them to pray for Mahesa, a great child with mucopolysaccharidosis (MPS) type 2, who has passed away two days ago. "Mahesa should have a birthday this February 27th, but it turns out that God loves him more," she said. Besides Mahesa, Edo, a great child of MPS type II, at that time was also struggling with his illness. Edo was being treated at the ICU because he had a problem with his brain. Peni asked the invited guests to pray together for Edo. Permata Sari, as the MC of the event, announced invited guests to open the website of Yayasan MPS dan Penyakit Langka Indonesia if they wanted to find out more about rare diseases in Indonesia. She also said if they wanted to donate, the donations could be given directly. Putri continued entertaining them by singing Dewi Lestari's song ‘Malaikat Juga Tahu’ and Melly Goeslaw's ‘Bunda'. Harvey Malaihollo also performed by singing ‘Lilin-Lilin Kecil’and dueting with Whizzy singing ‘Begitulah CInta’.


Dr. dr. Damayanti Rusli Sjarif, SpA (K) was welcomed by the great children and their families. She just landed from Singapore and went to attend this event directly. They were very happy seeing dr. Damayanti was there. "Although the prevalence of rare disease is less than 2000 patients, it does not mean that rare diseases can be abandoned," she opened her speech that night. "When other children want to become a youtuber, engineers, doctors, pilots, police, our children here only wish to get the treatment," she continued. Dr. dr. Damayanti Rusli Sjarif, SpA (K) asked Sashi, a phenylketouria (PKU) patient, to come on to the stage. "Sashi is a clear evidence that rare diseases, if diagnosed earlier and treated properly, will be able to be a better future generation. Sashi is now fluent in five languages on her young age," she explained. Sashi was lucky because she was born in Tokyo, Japan. She was diagnosed with PKU when she was 4 days old. It is this newborn screening that is now being fought for in Indonesia. She also explained about the cost for their treatment. "Of course it is not cheap, 6 billion per year for each child, this is really not small amount. But, we never give up," she said.


When I was just a little girl
I asked my mother, what will I be
Will I be pretty? Will I be rich?
Here's what she said to me

Que será, será. Whatever will be, will be
The future's not ours to see
Que será, será. What will be, will be


‘Que Sera Sera’ sung by these great children was able to shed the tears of the invited guests. These great children got on stage enthusiastically, some of them got on to the stage with their parents, the others even in their wheelchairs. Their performance suddenly raised the humanity side of anyone in that room. Donations that began to accumulate seemed to rearrange these children's dreams. The event closed with the performance of RAN. Their four most popular songs, such as ‘Pandangan Pertama’, ‘Selamat Pagi’, 'Dekat di Hati’, and ‘Melawan Dunia’ closed perfectly the event.


Apa yang kita jalani sulit mereka pahami
Namun ku yakin ada jalan untuk kita bersama

Asalkan kita berani mencinta sepenuh hati
Meski seakan aku dan kamu melawan dunia

(Melawan Dunia, RAN)


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