Miran ali needs our help SMA type 1

Fundraising campaign by Nuray Saz
  • €856.00
    raised of €2,000,000.00 goal goal
0% Funded
54 Donors
Help this ongoing fundraising campaign by making a donation and spreading the word.
Show more
Show less

English­čçČ­čçž

Dear Friends and Supporters,

I am writing to ask for your help in supporting a very special child named Miran Ali. Miran Ali is only ten months old, but he has already been diagnosed with Spinal Muscular Atrophy (SMA) Type I, a rare and life-threatening genetic disorder that affects his ability to move, breathe, and even swallow.


What is SMA?

SMA (Spinal Muscular Atrophy) is a progressive genetic disorder that attacks motor neurons. Children with Type 1 have limited movement, trouble breathing and feeding, and with no known cure, many children with Type 1 do not live past two years old.

SMA is a devastating disease that affects approximately 1 in 10,000 infants and is caused by a mutation in the SMN1 gene. SMA Type I is the most severe form of the disease, and unfortunately, it is also the most common.


Is there a treatment?

However, a ground-breaking treatment has recently been approved by the FDA. The treatment is one of the worldÔÇÖs most expensive drugs. Healthcare in Turkey unfortunately does not cover this cost. It has a price tag upwards of $2M, leaving many families, including ours, without access to this life-saving drug.


What now?

Our family is facing immense emotional and financial stress as we try to provide the best possible care for our son. We need help to cover the cost of medical expenses, that will make it possible for Miran Ali to live as independently as possible and to receive the care he needs to survive.

To make matters worse, on 6 February 2023, at 04:17 a magnitude 7.7 earthquake occurred in Pazarcik, Kahramanmaras, T├╝rkiye, followed by an earthquake of 7.6 in Elbistan, Kahramanmaras occurred the following day in the same region. This is the largest disaster of the century. There was widespread damage and tens of thousands of fatalities.

Due to the earthquakes, our family now lives in a tent in constant fear of aftershocks. We are struggling to access basic necessities, as well as medical supplies for our child. The earthquake has left our home severely damaged, making it unsafe to live in, and we have been forced to evacuate to live in a tent. Our family is deeply anxious about the future and the uncertainty of when we will be able to return home. In the meantime, we are doing our best to cope with the challenging living conditions.

We are asking for your help to support our family in our time of need. Any donation, no matter how small, will go a long way in helping to alleviate the financial burden that we are facing. Your support will help to ensure that Miran Ali has access to the medical care and equipment he needs to live his life to the fullest.

Please consider making a donation today to help support Miran Ali and our family. Your generosity will make a world of difference to us, and to Miran Ali's quality of life.

Thank you for your support.

You can follow Miran Ali's journey on Instagram: https://instagram.com/sma.miranali?igshid=MjljNjAz...

-

Deutsch ­čçę­čç¬

Liebe Freunde und Unterst├╝tzer,

Ich schreibe, um Sie um Hilfe bei der Unterst├╝tzung eines ganz besonderen Kindes namens Miran Ali zu bitten. Miran Ali ist erst zehn Monate alt, aber er wurde bereits mit Spinaler Muskelatrophie (SMA) Typ I diagnostiziert, einer seltenen und lebensbedrohlichen genetischen Erkrankung, die seine F├Ąhigkeit beeintr├Ąchtigt, sich zu bewegen, zu atmen und sogar zu schlucken.


Was ist SMA?

SMA (Spinal Muscular Atrophy) ist eine fortschreitende genetische Erkrankung, die motorische Neuronen angreift. Kinder mit Typ 1 haben begrenzte Bewegungsm├Âglichkeit, Probleme beim Atmen und bei der Nahrungsaufnahme. Ohne Behandlung leben viele Kinder mit Typ 1 nicht l├Ąnger als zwei Jahre.

SMA ist eine verheerende Krankheit, die etwa 1 von 10.000 S├Ąuglingen betrifft und durch eine Mutation im SMN1-Gen verursacht wird. SMA Typ I ist die schwerste Form der Krankheit und leider ist sie auch die h├Ąufigste.


Gibt es eine Behandlung?

Eine bahnbrechende Behandlung wurde jedoch k├╝rzlich von der FDA zugelassen. Die Behandlung ist eines der teuersten Medikamente der Welt. Leider deckt die Gesundheitsversorgung in der T├╝rkei diese Kosten nicht ab. Der Preis liegt bei ├╝ber 2 Millionen US-Dollar, was viele Familien einschlie├člich unserer ohne Zugang zu diesem lebensrettenden Medikament zur├╝ckl├Ąsst.


Was jetzt?

Unsere Familie steht unter immensem emotionalen und finanziellen Stress, w├Ąhrend wir versuchen, die bestm├Âgliche Versorgung f├╝r unseren Sohn zu gew├Ąhrleisten. Wir ben├Âtigen Hilfe, um die Kosten f├╝r medizinische Ausgaben zu decken, damit es Miran Ali m├Âglich ist, so unabh├Ąngig wie m├Âglich zu leben und die Behandlung zu erhalten, die er ben├Âtigt, um zu ├╝berleben.

Zu allem ├ťberfluss ereignete sich am 6. Februar 2023 um 04:17 Uhr ein Erdbeben der St├Ąrke 7,7 in Pazarcik, Kahramanmaras T├╝rkei, gefolgt von einem Erdbeben der St├Ąrke 7,6 in Elbistan, Kahramanmaras am folgenden Tag in derselben Region. Dies ist die gr├Â├čte Katastrophe des Jahrhunderts. Es gab weit verbreitete Sch├Ąden und zehntausende Todesopfer.

Aufgrund der Erdbeben lebt unsere Familie jetzt in einem Zelt und hat st├Ąndige Angst vor Nachbeben. Wir haben Schwierigkeiten, auf grundlegende Bed├╝rfnisse sowie medizinische Versorgung f├╝r unser Kind zuzugreifen. Das Erdbeben hat unser Haus schwer besch├Ądigt, so dass es unsicher ist, darin zu leben, und wir wurden gezwungen, in ein Zelt zu evakuieren. Unsere Familie ist zutiefst besorgt ├╝ber die Zukunft und die Ungewissheit, wann wir in der Lage sein werden, nach Hause zur├╝ckzukehren. In der Zwischenzeit tun wir unser Bestes, um mit den schwierigen Lebensbedingungen zurechtzukommen.

Wir bitten Sie um Ihre Hilfe, um unsere Familie in unserer Notlage zu unterst├╝tzen. Jede Spende, egal wie klein, wird dazu beitragen, die finanzielle Belastung, der wir gegen├╝berstehen, zu lindern. Ihre Unterst├╝tzung wird dazu beitragen, dass Miran Ali Zugang zur medizinischen Versorgung und Ausr├╝stung hat, die er ben├Âtigt, um sein Leben in vollen Z├╝gen zu genie├čen.

Bitte erw├Ągen Sie eine Spende heute, um Miran Ali und unsere Familie zu unterst├╝tzen. Ihre Gro├čz├╝gigkeit wird f├╝r uns und f├╝r Miran Alis Lebensqualit├Ąt einen enormen Unterschied machen.

Vielen dann f├╝r Ihre Unterst├╝tzung.

Ihr k├Ânnt Miran Ali's Fortschritte auf Instagram verfolgen: https://instagram.com/sma.miranali?igshid=MjljNjAz...

-

T├╝rkce­čç╣­čçĚ

Sevgili arkada┼člar ve destek├žiler,

Ben size ├Âzel bir ├žocuk olan Miran Ali'ye destek olmak i├žin yard─▒m─▒n─▒za ba┼čvurmak i├žin yaz─▒yorum. Miran Ali hen├╝z on ayl─▒kken Spinal Muscular Atrophy (SMA) Tip I ile te┼čhis edildi, bu nadir ve ya┼čam─▒ tehdit eden genetik bir hastal─▒kt─▒r ve hareket etme, nefes al─▒p yutma yetene─čini etkiler.

SMA nedir?

SMA (Spinal Muscular Atrophy), motor n├Âronlar─▒ hedefleyen ilerleyici bir genetik hastal─▒kt─▒r. Tip 1 SMA'l─▒ ├žocuklar─▒n s─▒n─▒rl─▒ hareketlilikleri, solunum ve yeme sorunlar─▒ vard─▒r. Tedavi olmadan Tip 1 SMA'l─▒ ├žocuklar─▒n pek ├žo─ču iki y─▒ldan fazla ya┼čamazlar.

SMA, yakla┼č─▒k 10.000 bebekten birini etkileyen ve SMN1 genindeki bir mutasyon taraf─▒ndan neden olan y─▒k─▒c─▒ bir hastal─▒kt─▒r. SMA Tip I, hastal─▒─č─▒n en ciddi formudur ve ne yaz─▒k ki en s─▒k g├Âr├╝len formdur.


Tedavisi var mi?

Ancak FDA taraf─▒ndan yak─▒n zamanda onaylanan ├ž─▒─č─▒r a├žan bir tedavi mevcuttur. Tedavi, d├╝nyan─▒n en pahal─▒ ila├žlar─▒ndan biridir. Maalesef, T├╝rkiye sa─čl─▒k hizmetleri bu maliyetleri kar┼č─▒lamamaktad─▒r. Maliyeti 2 milyon dolardan fazlad─▒r ve bizim gibi bir├žok aileye, hayat kurtaran bu ilaca eri┼čim sa─člayamamaktad─▒r.


Ne yapabiliriz?

O─člumuz i├žin en iyi bak─▒m─▒ sa─člamak i├žin m├╝cadele ederken, ailemiz a─č─▒r duygusal ve maddi bask─▒ alt─▒ndad─▒r. Hayatta kalmas─▒ i├žin ihtiya├ž duydu─ču tedaviyi alabilmesi ve m├╝mk├╝n olan en ba─č─▒ms─▒z ┼čekilde ya┼čayabilmesi i├žin t─▒bbi masraflar─▒n kar┼č─▒lanmas─▒ i├žin yard─▒ma ihtiyac─▒m─▒z var.

├ťstelik, Kahramanmara┼č T├╝rkiye'deki Pazarc─▒k'ta 6 ┼×ubat 2023'te 04.17'de 7,7 b├╝y├╝kl├╝─č├╝nde bir deprem, ayn─▒ b├Âlgede bir sonraki g├╝n Elbistan'da 7,6 b├╝y├╝kl├╝─č├╝nde bir deprem meydana geldi. Bu y├╝zy─▒l─▒n en b├╝y├╝k felaketi. Geni┼č ├žapl─▒ hasarlar ve on binlerce ├Âl├╝ bulunmaktad─▒r.

Depremler nedeniyle ailemiz ┼ču anda bir ├žad─▒rda ya┼č─▒yor ve s├╝rekli art├ž─▒ depremlerden korkuyoruz. Temel ihtiya├žlara ve ├žocu─čumuzun t─▒bbi bak─▒m─▒na eri┼čimde zorluklar ya┼č─▒yoruz. Deprem evimizi ciddi ┼čekilde hasar verdi, bu y├╝zden i├žinde ya┼čamak g├╝vensiz ve bir ├žad─▒rda ya┼čamam─▒z laz─▒m. Ailemiz gelecek ve ne zaman evimize d├Ânebilece─čimize dair belirsizlikten derinden endi┼čeli. Bu arada, zorlu ya┼čam ko┼čullar─▒yla ba┼ča ├ž─▒kmak i├žin elimizden gelenin en iyisini yap─▒yoruz.

Ailemizi bu zor durumda desteklemek i├žin yard─▒m─▒n─▒za ihtiyac─▒m─▒z var. Herhangi bir miktarda ba─č─▒┼č, kar┼č─▒la┼čt─▒─č─▒m─▒z maddi zorluklar─▒ hafifletmeye yard─▒mc─▒ olacakt─▒r. Yard─▒m─▒n─▒z, Miran Ali'nin hayat─▒n─▒ tamamen ya┼čamas─▒ i├žin ihtiya├ž duydu─ču t─▒bbi bak─▒m ve ekipmana eri┼čimini sa─člayacakt─▒r.

L├╝tfen Miran Ali ve ailemize destek olmak i├žin bug├╝n ba─č─▒┼č yapmay─▒ d├╝┼č├╝n├╝n. C├Âmertli─činiz bizim ve Miran Ali'nin ya┼čam kalitesi i├žin muazzam bir fark yaratacakt─▒r.

Destekleriniz i├žin te┼čekk├╝r ederiz.

Miran Alinin hikayesini Instagramdan da takip edebilirsiniz: https://instagram.com/sma.miranali?igshid=MjljNjAz...

Organizer

Donors

  • Vakkas Armina Kayra
  • Donated on Apr 09, 2024
€10.00
  • Anonymous
  • Donated on Apr 05, 2024
Amount Hidden
  • Rukiye Altun
  • Donated on Mar 20, 2024
€20.00

No updates for this campaign just yet

Donors & Comments

54 donors
  • Vakkas Armina Kayra
  • Donated on Apr 09, 2024
€10.00
  • Anonymous
  • Donated on Apr 05, 2024
Amount Hidden
  • Rukiye Altun
  • Donated on Mar 20, 2024
€20.00
  • Altun Rukiye
  • Donated on Feb 20, 2024
€50.00
  • Anonymous
  • Donated on Jan 28, 2024
€1.00
  • Zz Ee
  • Donated on Jan 26, 2024
€1.00
  • Sibel Sent├╝rk
  • Donated on Jan 19, 2024
€20.00
  • Yusuf Kaya
  • Donated on Jan 16, 2024
€50.00
  • Dilara Agkale
  • Donated on Jan 02, 2024
  • Mehmet G├╝ven karde┼činden Miran Ali i├žin destekÔŁĄ´ŞĆ

€31.00
  • Omer Yildiz
  • Donated on Dec 31, 2023
€10.00
Show more donors

Followers

7 followers
Nejla Polat
Emine Basyan
Serhat Mendil
Ceren Dasdemir
Mahmut Altun
Sevgi Saz
Ekin Saz
€856.00
raised of €2,000,000.00 goal
0% Funded
54 Donors

Help this ongoing fundraising campaign by making a donation and spreading the word.

Not Ready to Donate?

Did you know a 10 second Facebook share raises an average of €25?

Share on Facebook