LAS CRUCES, N.M. (AP) — Moustapha Idrissa and Balkissa Boubacar’s first child was born eight years ago. Muhammad was perfect and the young family was happy. However, standard tests on the newborn revealed he had sickle cell anemia.
Sickle cell diseases are inherited blood disorders that affect millions of people each year — particularly those with ancestors from sub-Saharan Africa, Spanish-speaking areas of the Western Hemisphere, Saudi Arabia, India and several Mediterranean countries, according to the Centers for Disease Control and Prevention.
Normal red blood cells are circular and contain the protein hemoglobin, which carries oxygen. But in patients who have SCD, their hemoglobin is abnormal, causing red blood cells to become sickle- or banana-shaped. The odd shape can lead to blockages, strokes and other complications.
Many people diagnosed with the disorders experience excruciating pain. Muhammad has not.
“Some describe it as if you take a nail and hammer hitting the bone,” Moustapha told the Las Cruces Sun-News, noting that some people are given morphine because the pain is so bad.
The disease can be managed in some cases by making sure the person isn’t too hot or too cold, is hydrated and by managing diet. These are several of the ways the Idrissa family managed Muhammad’s condition and he has largely been able to lead a normal life. Still, Muhammad has taken note of how his childhood differs from others.
“When he was young, he (would) ask me why is he the only one getting poked (by needles) all the time,” Moustapha said of his son. “When I take him to the hospital and they try to get blood from him, sometime they check him three, four, five times a day getting like five, ten tubes (of blood). It’s hard.”
Muhammad needs bone marrow transplant
Moustapha is from The Republic of Niger in West Africa but traveled to the U.S. as an adult. The family later moved from Washington D.C. to Santa Fe where Moustapha studied sustainable agriculture, including hydroponics and aquaponics. He also operated a popular food cart, Mafe Café, where he served West African and New Mexican fusion food.
In 2019, Moustapha took Muhammad to Tennessee for routine scans after he started exhibiting SCD symptoms. Doctors found Muhammad had suffered a silent stroke, which happens when blood and oxygen are blocked from going to the brain, but the patient exhibits no noticeable symptoms. This can be a warning of a more serious stroke.
Moustapha said doctors suggested Muhammad needed a bone marrow transplant — the only known treatment to cure SCD.
By this time the family had grown to include another son, Ibrahim, and daughter, Jennah, who was born premature weighing just 2 pounds. She had to stay in the Neonatal Intensive Care Unit for months before her family could take her home.
Muhammad’s family were tested to see if they were a bone marrow match. It wasn’t until Jennah was 9 months old that she was tested and she came back a perfect match for her older brother. However, Jennah needed to grow before the transplant procedure could happen.
“That’s a big sigh of relief because some people go like 20, 15 years (before a donor match is found) and that can create all kind of problems. And so we’re really happy,” Moustapha said.
Moving to Las Cruces
In the meantime, the family moved to Las Cruces in July 2020 at the advice of doctors and Muhammad started getting blood transfusions every few weeks. Another way to manage SCD is to avoid high elevations.
The blood transfusions are used to trick Muhammad’s body into thinking there is no need to produce more blood cells, as there are already enough in his body. So far this has been successful, but it also means Muhammad has accumulated more iron in his body than is safe. Doctors are currently working to address this.
Today, Muhammad is 8 years old and Jennah is 3. Their siblings, Ibrahim and Iman, are 5 years and 18 months, respectively. Muhammad is the only child to be diagnosed with SCD.
Moustapaha described his children as happy, energetic little ones. After moving to Las Cruces, he started taking classes at New Mexico State University and recently graduated with a bachelor’s degree from the College of Agricultural, Consumer and Environmental Sciences.
The transplant process is scheduled to begin in July at Seattle Children’s Hospital. Testing and preparation will take about a month, Moustapha said, then the actual procedure will take place. The following month will be critical to ensure Muhammad’s body accepts the transplant and to allow Jennah to heal.
According to the Mayo Clinic, Muhammad’s immune system will be suppressed to prepare for the transplant. Samples taken from Jennah will be introduced to her brother’s body. The idea is that the new bone marrow will allow Muhammad’s body to produce healthy, circular red blood cells on its own.
The entire family will relocate to Seattle for nearly a year as it is too expensive to maintain residences in both states. Moustapha said he will likely not be able to work while caring for his hospitalized children. A friend of the family started a GoFundMe page for them to help with travel costs, living expenses and any other medical expenses that may not be covered by insurance.
The online fundraiser has raised more than $4,600, but the page has a goal of $50,000.
Moustapha added that he was uncomfortable asking for help because he prefers to be the person who gives to others. But his family needs help and he is thankful for the generosity of the New Mexico community.
Next year, after the children are healthy, he said he plans to move the family back to Las Cruces, where he hopes to complete his master’s degree at NMSU. Las Crucens may even have the chance to try Moustapha’s fusion food.
‘Promise to God’
Moustapha’s long-term goal is to return to Africa to share the knowledge he has gained in his college studies and also to help people there suffering from SCD. Many do not have access to treatments such as those in western countries. He hopes to establish a sickle cell foundation in Africa.
“I made a promise to God that (once my son is healthy), I’m going to also help every sickle cell patient I come across,” Moustapha said.
He also made a promise to Muhammad and said his son is looking forward to the transplant.
“He’s excited about the bone marrow transplant because I told him I’ll take him to Africa after the transplant, but right now he has a port it’s not recommended I travel with him to Africa” Moustapha said. “He keeps telling people, ‘once my port is removed, then I can go to Africa and ride a horse.’ So he’s excited about that. He wants to play, wants to have fun.”