Emiliya needs help (U.S. site)

For Europe, visit www.gofundme.com/emiliya

This is Emiliya. She is two and a half years old, she lives in Azerbaijan, and she is a happy and smart kid (learning four languages already!). Emiliya needs your urgent help.

In May, Emiliya was diagnosed with a rare blood and bone marrow disorder called myelofibrosis. The disorder, a rare form of leukemia, is complicated and life threatening. The only known cure is a a bone marrow transplant, which the doctors say needs to happen as soon as possible.

The cost of the cure is estimated at 330,000 USD. Because Emiliya is not a German citizen and the family has no health insurance for the EU, the sum has to be paid out of pocket. The family cannot afford the treatment, so we’re asking for your help. The University Medical Center Freiburg in Germany, which specializes in rare pediatric cancers, will admit Emiliya when the funds are available.

My name is Lisa Smith and I am from the US, but have been friends with Emiliya's family for a number of years.  Therefore, I decided to support her parents, Ilgar (her father) and Nigar (her mother), by setting up this account to help raise money for them from friends and others in the States who wish to donate in US dollars.

Here’s the family’s story: 

Our little Emiliya has struggled with serious health issues from the very first months of her life: hydrocephalus (“water on the brain”), seizures, anemia, and serious digestive issues. 

About a year ago, Emi began battling a mysterious illness. First, we noticed that her tummy started bloating. An ultrasound showed that her liver and spleen were abnormally enlarged, and other tests showed that she was critically anemic (low red blood cells and hemoglobin). She wasn’t gaining weight, and generally seemed weak and in pain. Through these last twelve months, Emi has been checked into several clinics in Azerbaijan and Turkey, visited gastroenterologists, hematologists, metabolic specialists, and has endured scores of tests, scans, and painful biopsies.

Doctors across many hospitals in two different countries could not come up with a diagnosis. The only thing that seemed to help Emi stay relatively well was repeated blood transfusions.

At the age of two and a half, Emiliya still can’t walk on her own and struggles with chronic pain in her limbs. She is malnourished and has difficulty breathing because her enlarged liver and spleen are pressing on her stomach, lungs, and other organs. Blood transfusions have become a regular necessity.

With the financial help of a donor, the family has spent over a month in Germany, at the University Medical Center Freiburg, a top research clinic that specializing in complicated cases, such as Emiliya’s. In Freiburg, she underwent additional tests—biopsies, samples, gastroscopy, blood tests, and other procedures. The doctors saw immediately that her case was unusual.

Finally, at the end of May, the doctors gave us the discouraging diagnosis: myelofibrosis. According to our doctor, this illness is extremely rare, especially in children. Emi might be one of under ten recorded cases worldwide. 

Here’s a simplified summary of the disorder:

In a healthy body, bone marrow produces stem cells which then turn into blood cells. The marrow in Emi’s bones has mutated into fibrous scar tissue, which keeps replicating, and is not producing blood cells properly. Her liver and spleen have distended, working hard to compensate for abnormal blood production, but it’s creating other health problems. These symptoms can progress and create more dangerous issues, and can turn into a deadly form of cancer.

The only known treatment for myelofibrosis is a transplant of bone-marrow from a healthy donor, which will hopefully be found using a global donor database: healthy bone marrow equals healthy stem cells, which in turn equals healthy blood production.

While this would be a lifesaver, even if a donor is found—which is a challenge in itself—Emi’s body could potentially reject donor marrow. The procedure also requires additional treatment, like chemo and immune system suppression, which may create additional complications (such as infections). In other words, even with a healthy transplant, the treatment will be risky. 

The Freiburg clinic estimates that the treatment will cost about 300,000 EUR. Emi needs a transplant as soon as possible because her condition will continue to progress and become more life threatening.

The raised funds will pay for Emiliya’s transplant procedure, preceded by chemotherapy and followed by post-transplant care and medication. As soon as the funds are collected and withdrawn, they will be transferred to the University Medical Center Freiburg, where Emiliya's treatment will begin.

We are hoping to raise the money within two months.

As her parents, we want to do all that we can to save Emiliya’s life and to give her a fighting chance.

We cannot afford this treatment, and we need your help.

Thank you for your support!

Ilgar, Nigar, and Emiliya

 P.S.: Below is a letter provided by Prof. Dr. Niemeyer and the most recent medical report from the Freiburg clinic: