The First Encounter with Emad's House; Tears and Smiles

On December 5th, my first encounter as a senior expert in the Corporate Social Responsibility project at Netrise with Emad's House took place. That day was supposed to be just about exchanging administrative paperwork, but the presence of two of the hosts from this household led to more social interaction. They told me stories about Emad and how they divided responsibilities among themselves; as time went on, more details emerged, so much so that we went to the storeroom and examined everything from bags of divided rice to weekly distributions of meat and pasta.

When they wanted to show me the rooms, we arrived at Khadijeh’s, mother of Abolfazl. She was overjoyed and busy walking around the room to deliver things. Amina, one of the hosts, considered my request to examine Abolfazl every two weeks after his transplant to be appropriate. Now it was time for them to return home. The good mood from those moments prompted us to talk; Khadijeh’s face was flushed, and she hurriedly told me about the days she was now happy to have finished. She spoke of relatives who shared symptoms with Abolfazl, and of a gene transferred from mother to son, days when she browsed the internet about hyper IgM immune deficiency, and at some point decided to simply rely on the hospital staff's statements for her peace of mind, passing on the idea of further searching. She talked about nights when she couldn't sleep, and the day her second son, Mehdi, was prepared for transplant to his brother.

As she took out the suitcases, she pointed to a large package they bought for the younger son with Abolfazl. She expressed gratitude for all the days she endured the house without a mother or brother, for the bravery shown during the transplant, for the days she will quarantine and protect herself, and for the second life she gave to Abolfazl.

The last photos, long goodbyes, passing under the Quran—all these were part of Ameneh’s longing gaze. Ameneh, who came from a place near Sanandaj for her second child, was now 14 years old, and even today, the doctor hadn't seen her ready for biweekly check-ups.

When Khadijeh left, and the sound of laughter stopped, and the house was left alone with us; Ameneh sat beside me wearing a colorful chador. I can't say whether these words emerged amid the sobs or if the sobs broke through the words. Ameneh told me about her first child, a girl who overnight took on all the roles of the mother in the family, and about her youngest child, whom she doesn't know how managed to go to school this year. From the low ceiling of Tehran's sky, from longing for the smell of home, from days that seem endless no matter how many times she counts them, and more...

Ameneh says that on October 20th, 2021, after three days of no appetite and excessive sleep, Shayan was taken to Sanandaj. They didn't even imagine that on the same day they would have to urgently go to Tehran. Despite all this, it wasn't the worst day of Ameneh’s life. In the summer, when it reached mid-season, Shayan suddenly vomited blood nonstop for a night. The blood sometimes was thick and frozen so much that Ameneh regarded it as meat blood. As Shayan's condition worsened, he was transferred from the blood section to the infectious section, and Ameneh thought that to prevent others from losing hope, they transferred Shayan to a room where no other patient was present. That night, Ameneh called out to God from the hospital yard, and even now, her whole face wets with tears for that lonely moment. At 5 AM, Shayan received blood, and the blood platelets gradually increased. A sign that God heard Ameneh’s voice that night.

Ameneh has witnessed many difficult days during her year and a bit of living in Tehran. Before her transplant surgery, she spent nights in the hospital courtyard until morning, and at one point, she arranged a place to sleep in the office of a distant relative. But finally, on September 8th, 2022, on Shayan's birthday, her bone marrow transplant was performed with his sister. Now, Emad's house, during the household quarantine days after the transplant, welcomes this mother and son. Although it can't alleviate the sorrow and pain of the child, it is a refuge for their nights and days of helplessness. We at Netrise are delighted to stand with Emad, so that Amenehs in this city can endure Tehran’s low sky ceiling until they return to their homeland.

That day, Emad’s house reflected both sides of the coin, and I was a narrator of tears and smiles, which perhaps more than anyone else, the hosts at Emad’s house were witnesses and witnesses. Those who voluntarily devote themselves to service, visiting homes several times a week to assess family needs, resolve recent incidents, supply raw materials for children's food, and more. They have often become the silent listeners and long-hour confidants of mothers’ pains.

For this reason, we aim to narrate the stories of one of the hosts at Emad’s house, while respecting families’ privacy and maintaining the order of their homes. With hope that our eyes will open to other corners of this land and that this may serve as a reason to restart and begin anew, even among those who read these lines.

Netrise will narrate the stories of "Room 5 Hosts" until the end of this year. A room that, through its funding, has given us the opportunity to fulfill our social responsibility and has opened a window to another world.