Yuk Bantu Rachel Sembuh dari MPS 4A

SUCCESS

Sefrina Aryani Aritonang

[NB: English narration is available at the lower part of this section] Halo om dan tante #OrangBaik! 
Perkenalkan namaku Rachel Stania Nadeak. Saat ini aku berusia 11 tahun.
Papaku bernama Deddy S. Nadeak dan mamaku bernama Sefrina Aryani Aritonang. Aku punya satu adik lelaki berusia 6 tahun bernama Robbie Matthew Nadeak.
<img src="https://img.kitabisa.cc/size/720/86bdee0f-be1e-47fe-8c06-c13540ce17f0.jpg" class="img-fluid img-responsive" style="border:0px;vertical-align:middle;height:auto;" alt="86bdee0f-be1e-47fe-8c06-c13540ce17f0.jpg" />Saat ini aku bersekolah di salah satu homeschooling di Bekasi dan duduk di kelas 5 SD. Hobby-ku adalah painting dan bernyanyi.
Manurut cerita mamaku, aku lahir normal dan tumbuh layaknya anak-anak lain pada umumnya. Aku bisa duduk, merangkak, berbicara, dan berjalan sesuai dengan usia-ku. Bahkan saat aku berusia 3,5 tahun, aku sudah dapat membaca dan menulis dengan baik lho, om dan tante!
<img src="https://img.kitabisa.cc/size/1000/ee912ab8-feb6-4f1d-8a86-331eac857558.jpg" class="img-fluid img-responsive" style="border:0px;vertical-align:middle;height:auto;" alt="ee912ab8-feb6-4f1d-8a86-331eac857558.jpg" />Mama dan papa juga sangat bangga denganku saat aku sekolah jenjang TK, karena aku memiliki prestasi yang sangat membanggakan dan menerima berbagai penghargaan. Meskipun demikian, aku tidak bisa melanjutkan ke jenjang sekolah dasar (SD) karena kondisi fisik-ku tidak sekuat anak-anak pada umumnya. Aku dan mama sangat sedih mengetahui hal ini, tetapi memang tidak bisa dipungkiri bahwa saat itu telapak kaki-ku semakin melemah untuk dibawa berjalan dan berlari, sehingga aku sering digendong ketika akan berangkat ke sekolah.
Meskipun begitu, aku dan mama tidak putus asa! Kita mencari sekolah-sekolah lain yang mau menerima kondisi fisik yang aku miliki. Puji Tuhan, perjuangku dan mama tidak sia-sia, karena ada satu sekolah yang mau menerimaku untuk bersekolah di tempat tersebut. Aku sangat bahagia sekali karena aku akhirnya bisa melanjutkan sekolah dan duduk di kelas 1 SD.
<h2>Sedihnya, pada akhir bulan Maret 2014, aku harus dirawat selama satu bulan di ruang PICU salah satu rumah sakit di Jakarta karena aku mengidap pneumonia. Struktur paru-paruku yang abnormal membuat penyakit pneumonia yang bersarang di tubuhku sulit untuk disembuhkan.</h2>
<img src="https://img.kitabisa.cc/size/1000/b73edaae-280d-4bce-9fd2-def1dae4f353.jpg" class="img-fluid img-responsive" style="border:0px;vertical-align:middle;height:auto;" alt="b73edaae-280d-4bce-9fd2-def1dae4f353.jpg" />Tetapi syukurlah, dengan bantuan doa dari keluarga dan sahabat-sahabatku serta perawatan medis, aku bisa survive dari penyakit tersebut di bulan Mei 2014. Tetapi karena kondisi fisik-ku yang masih sangat lemah, akhirnya aku tidak bisa meneruskan sekolahku untuk sementara waktu. Pada saat itu bagian tubuh sebelah kiriku juga mengalami kelumpuhan, sehingga aku tidak lagi mampu untuk mengangkat tangan kiriku.
<h2>Oiya, aku lupa bilang bahwa penyakit yang aku miliki itu bernama Morquio Syndrome type 4A (Mukopolisakaridosis IV) atau biasa disingkat menjadi MPS4A. Menurut artikel yang pernah aku baca, MPS4A ini adalah suatu kelainan genetik, dimana tubuhku tidak memiliki suatu enzim (N-acetylgalactosamine-6-sulfatase atau GALNS) yang berfungsi untuk menguraikan zat-zat atau racun yang tidak diperlukan oleh tubuhku. Karena tidak memiliki enzim pengurai tersebut, organ-organ yang ada ditubuhku lama-lama akan semakin melemah dikarenakan terjadi penumpukan zat beracun tersebut.</h2>
Saat ini aku tidak mampu berjalan seperti teman-temanku lainnya dan hari-hariku kuhabiskan dengan duduk di kursi roda. Untuk memperbaiki kondisi-ku, aku membutuhkan terapi sulih enzim selama satu tahun. Enzim tersebut tidak ada di Indonesia dan harganya sangat mahal, yaitu sekitar enam milyar untuk satu tahun pengobatan. 
<h2>Meskipun memiliki penyakit yang membuat kondisiku menjadi terbatas, aku tetap selalu semangat! Aku akan terus perjuang melawan penyakit ini meskipun perjuangan itu harus aku lakukan seumur hidupku!</h2>
<img src="https://img.kitabisa.cc/size/640/a799907b-f5b8-4853-afa7-a3ec3b4ac0a5.jpg" class="img-fluid img-responsive" style="border:0px;vertical-align:middle;height:auto;" alt="a799907b-f5b8-4853-afa7-a3ec3b4ac0a5.jpg" />Terlebih lagi, aku memiliki papa dan mama selalu men-support keadaanku. Bagiku, mereka berdua adalah malaikat tak bersayapku! Mereka selalu bilang kalau bahwa hati yang gembira adalah obat, percayalah selalu ada miracle di dunia ini. 
Selain endless support dari kedua orantua-ku, aku sangat berharap om dan tante #OrangBaik yang ada diluar sana turut mendoakanku dan membantuku untuk share sebanyak-banyaknya kisahku ini.
Untuk om dan tante #OrangBaik yang mau membantu dengan cara berdonasi, om dan tante bisa berdonasi dengan cara:
<ol><li>Klik "DONASI SEKARANG"</li><li>Masukkan nominal donasi</li><li>Pilih BANK (BNI/Mandiri/BCA/BRI/BNI Syariah/Kartu Kredit)</li><li>Klik "DONASI" dan ikuti langkah selanjutnya</li></ol>Atau salurkan dengan Lebih Mudah via GO-PAY:
<ol><li>Klik "DONASI SEKARANG"</li><li>Masukkan nominal donasi</li><li>Pilih metode pembayaran dengan GO-PAY</li><li>Klik "DONASI" dan ikuti langkah selanjutnya</li></ol>Bantuan yg diberikan oleh om dan tante, sekecil apapun itu, akan selalu menjadi penyemangatku supaya aku bisa berjalan kembali seperti sedia kala.
Terimakasih aku ucapkan kepada om dan tante #OrangBaik, serta semua pihak yang sudah ikut berpartisipasi membaca kisahku ini.
Aku selalu percaya kalau God is good all the time. Salam sayang,
Rachel
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Help Rachel to get the enzyme replacement treatment
Hello #GoodPeople,
My name is Rachel Stania Nadeak and I am 11 years old.
My dad’s name is Deddy S. Nadeak and my mom’s is Sefrina Aryani Aritonang. I have one younger brother aged 6, named Robbie Matthew Nadeak.
Currently I attend one of the homeschooling in Bekasi, which is located about 20 kms east of Jakarta, the capital city of Indonesia. I am now at 5th
grade of Elementary school. My hobby is painting and singing.
According to my mom, I was born normal and grew up like other children in general. I was able to sit, crawl, talk, and walk like any other kid at my age. Even when I was 3.5 years old, I’d been able to read and write well.
Mom and dad are also very proud of me when I entered KINDERGARTEN school because I had a very proud achievement and received numerous awards. However, I could not continue to elementary school (SD) because of the physical condition-I&#39;m not as strong as other children in general. I and mom were very sad to know this, but it cannot be denied that at that moment the soles of my feet were getting weaker to carry walking and running, so I was often carried when going to school.
Even so, I and mom did not desperate! We were looking for other schools that accept student with limited physical condition like me. Praise the Lord, our struggle and effort was not in vain, because there was one school that wanted to accept me as a student. I was very happy that time because I could finally continue my education and sat at 1st grade in Elementary school. 
<h3>Sadly, at the end of March 2014, I had to be treated for more than a month in the PICU (Pediatric Intensive Care Unit) room at one hospital in Jakarta due to suffering from pneumonia. The structure of my abnormal lungs made the pneumonia that lodged in my body was apparently difficult to be cured.</h3>
But thankfully, with the help of prayer from family and friends as well as medical care, I could survive from the disease in the month of May 2014. But because of the severe physical condition caused by the pneumonia effect, finally I could not continue my school for a while. What made worse was that the left part of my body also got paralyzed so I was no longer able to lift my left hand.
<h3>Anyway, I forgot to tell you that the disease I am suffering from is called Morquio Syndrome type 4A (Mukopolisakaridosis IV) or commonly abbreviated as MPS4A. According to the articles I&#39;ve ever read, MPS4A is a genetic disorder, where my body does not have an enzyme (N-acetylgalactosamine-6-sulfatase, or GALNS) that serves to decompose substances or toxins that are not needed by our body. Because it does not have the enzyme decomposition, my body is getting more and more weakened due to the buildup of toxic substances.</h3>
At this moment I&#39;m not able to walk like my friends and my days are spent sitting in a wheelchair. I so fully rely on my family member to support and provide me with everything that I need.
To improve the condition of my body, I really need enzyme replacement therapy (ERT) for one year. The enzyme (<a href="https://www.vimizim.com/)">Vimizim</a>
as it is called) does not exist in Indonesia and the price is very expensive, which is about <a href="https://www.bizjournals.com/sanfrancisco/blog/biotech/2014/02/drug-prices-biomarin-vimizim-bmrn.html">six billion</a> rupiah for one year of treatment 
<h3>Despite having a disease that makes my condition to being extremely limited, I always keep my spirit up! I will continue to fight against this disease although the struggle that I have to bear for the rest of my life!</h3>
What&#39;s more, I have mom and dad who are always there to support me. To me, they both are my wingless angels! They always say that a cheerful heart is a true good medicine, told me that there will always be miracle in this world. That there will be a light at the end of the tunnel. That..I will never walk alone.
In addition to the endless support from both of my parents, I really hope #GoodPeople out there can pray for me and also help spread my story as much as possible.
For #GoodPeople who wants to help by contributing in a donation please kindly click “DONASI SEKARANG” (Donate Now) button.
Regardless of any small donation that you contribute, it will give me the force to keep fighting against this rare disease. 
Thank you very much for all #GoodPeople
who have read and spread my story as well as contributed in a donation. 
May God bless your kind heart.
Warm greetings, 
Rachel

Bantu Rachel untuk mendapatkan pengobatan ya, om dan tante!