Rare and Deadly SMA Disease Strikes Toddler – Family needs Donations

A young boy by the name of Muhammed (Muhammet) Eymen Kaya in Erzurum, Turkey was diagnosed with SMA Type 1 in February 2023. As a result of this critical diagnosis, Muhammed has been receiving treatment in the Erzurum City Hospital, but in order to continue living, Muhammed will need to be treated in Dubai with a one-time gene therapy treatment, and this specialized treatment costs 2.1 million US Dollars!

The treatment uses the newly released drug called Zolgensma, which was developed in and approved in the USA in 2019. It is the most expensive life-saving drug.

As a consequence of its price, the rarity of SMA, and how new the approved treatment is, there are very few hospitals around the world that use this gene therapy, and as such, Al Jalila Children’s Hospital of Dubai is the hospital where Turkish children with SMA type 1 are treated since 2020.

Below, I have provided some very important links to help you understand what SMA is and the necessity of this treatment. It may seem excessive, but when you look through the links, you will understand that this treatment is a necessity. Below are the PayPal and Go Fund Me links if anyone wishes to donate. I have also provided those in the photo, which is translated into English below:

Governor’s Office

22-1495 Özlem Kaya

Fighting SMA Disease

Muhammed Eymen

Let your donations breathe

SMA is a muscle disease that results from gene deficiency and has fatal consequences.

Its treatment is possible with a drug called zolgensma.

Must travel soon to Dubai medicare hospital, with which we have an agreement for treatment. The treatment cost is $1,879,000.

The donations you make for Muhammed Eymen are collected in an IBAN (International Bank Account Number) which is under the permission of the governorship and under protection.

Bank account number: NL24 BUNQ 2068 7308 55

Receiver: SMA Kids

Statement: Muhammed Eymen (Muhammet Eymen)

SMA Kids Foundation

With the Support of Our Heroes

50%

We are!

Governor’s Office

Target: $ 1,879,500 (US Dollars)

Collected: $ 939,750 (US Dollars)

Remaining: $ 939,750 (US Dollars)

T.C. Ziraat Bank: TR27 0001 0001 1260 9726 9650 06

Recipient: Özlem Kaya

Statement: Muhammed Eymen

Overseas Donation (BUNQ): NL24 BUNQ 2068 7308 55

Recipient: SMA Kids

Statement: Muhammed Eymen

Go Fund Me link: https://www.gofundme.com/f/muhammet-eymen-sma-type1

What is SMA and what does it do to the young child with this deadly and painful disease?

SMA (Superior mesenteric artery) “[is] a digestive condition that occurs when the part of the small intestine that connects to the stomach is pinched by two arteries.” (University of Maryland Medical System – https://www.umms.org/ummc/health-services/heart-vascular/services/vascular-disease/conditions/vascular-compressions/sma-syndrome#:~:text=Superior%20mesenteric%20artery%20syndrome%20(SMA,is%20pinched%20by%20two%20arteries)

“Compression of the SMA against the AA can prevent duodenal contents from draining into the jejunum (upper small intestine) hence the inability to get proper nutrition leading to weight loss and malnutrition. Pain from the compression can be debilitating, causing “food fear” and aggravating the condition.” (National Organization for Rare Diseases – https://rarediseases.org/rare-diseases/superior-mesenteric-artery-syndrome/)

“Children with type 1 have limited movement, can’t sit without support, and have trouble breathing, feeding, and swallowing. Symptoms begin at birth or within the first six months of life. Many children with type 1 do not live past age 2.” (Boston Children’s Hospital – https://www.childrenshospital.org/conditions/spinal-muscular-atrophysma#:~:text=It’s%20sometimes%20called%20Werdnig%2DHoffmann,first%20six%20months%20of%20life.)

How rare is SMA?

Last year, a five year old Turkish child was written about in Al Jazeera news for his quest to receive Zolgensma at Al Jalila in Dubai. In that report, it noted how Turkey suffers from an increased rate of SMA type 1 occurrences that sees 1 in 6,000 Turkish children suffer from the disease, compared with 1 in 10,000 children globally. (https://www.aljazeera.com/features/2022/11/21/gene-drug-only-hope-for-turkish-child-but-costs-millions)

Does the gene therapy Zolgensma work?

Yes, it does work. I do not know the statistics myself, but I have read articles that detail the recovery of patients that have received this life-saving treatment. One of these articles you can listen to with the link provided. This audio link speaks of an Egyptian child from Dubai who received Zolgensma at Al Jalila Hospital last year. (https://www.thenationalnews.com/uae/2022/08/22/doctors-in-dubai-use-21m-injection-to-help-boy-2-with-rare-mobility-disorder/)

A further link below also provides information on the study completed in the approval process for the drug from 2019: (https://www.drugs.com/medical-answers/zolgensma-expensive-3552644/)

Why does Muhammed need this treatment now?

Muhammed is currently less than two years old. This is crucial because the likelihood of survival decreases with every extra day not treated, and the target for doctors is to treat a child with any type of SMA, but especially Type 1, before the age of 2, or at the latest at 2. Now, of course, you can receive the treatment later as well, but again, it vastly decreases your likelihood of survival. Remember, most children with SMA Type 1 die before they reach 2 years old.

This is why early screening for SMA is so important for all children. If you or someone you know is having a child, make sure they are screened for SMA because the sooner you find out, the better for this potentially fatal disease. And, the screening process is quite easy and cheap, which is quite the opposite from the treatment. The link above with the article about the Egyptian child in Dubai goes into great detail about the screening process.

What has Erzurum done for Muhammed?

Now, I know what a lot of you are probably thinking, and that is why is Erzurum, Turkey, or some other entity closer connected to Muhammed not paying for this surgery?

Well, the simple answer to that question is that they are. But, due to high inflation of the Turkish Lira, the people of Erzurum are still seeking help from anywhere they can get to reach the 2.1 million US Dollar threshold they need.

For example, the Governor of the Erzurum Province has opened up a special bank account that allows people to deposit donations directly to Muhammed’s family.

Support groups have done SMS (messaging) campaigns, have held concerts, and have opened up bazaars with approval from both the provincial and municipal governments with the profits from the bazaar and concerts going directly to Muhammed’s treatment.

For this, both Risalettin (father) and Özlem (mother) Kaya are extremely thankful.

For further information, such as what is Zolgensma or why is it so expensive, a website called Drugs.com did a very good job answering both of these questions. Here are the links for those two answers: https://www.drugs.com/zolgensma.html and https://www.drugs.com/medical-answers/zolgensma-expensive-3552644/.

For links to Al Jalila Children’s Hospital of Dubai and its renowned Zolgesnma treatment, check out this link: https://aljalilachildrens.ae/media/al-jalila-children-s-introduces-the-first-of-its-kind-gene-therapy-in-the-uae.

Here are some of the links for Muhammed’s Instagram:

https://instagram.com/muhammedeymenenefesoll?igshid=NTc4MTIwNjQ2YQ==

https://instagram.com/muhammedeymeninumutdukkani?igshid=NTc4MTIwNjQ2YQ==

And here is the SMS messaging donation link:

https://muhammedeymenkaya.taplink.ws/?fbclid=PAAaarxb5Udi5NEbfMgcdMkSsdvZWquIRyw5bOyP2k8XHy9LSEyCr57XRdowI

How to spell Muhammed’s name?

You may spell it Muhammet or Muhammed. It is written both ways.