A miraculous match coupled with the strength of Related Donor Services gives a young boy new hope
Zion was born on Christmas day—the ultimate gift. However, his mother Chim also knew intuitively that something was wrong.
“I first noticed that everything wasn’t okay with Zion after he was born because he would just cry nonstop, cry all night,” Chim remembered.
Just eight days after giving birth, Chim took Zion to the hospital. His high-pitched cries and jaundiced appearance alarmed the doctors in the waiting room, who told her to take Zion to the pediatric emergency care unit right away. “That was the beginning of it,” Chim said. “From that day, he started to have blood transfusions. He couldn’t stay [alive] without blood transfusions.”
A difficult diagnosis
At just eight months old, Zion was officially diagnosed with sickle cell disease. Sickle cell disease is a blood disorder passed on from parents to children. With sickle cell disease, a person’s red blood cells are crescent shaped and hard and sticky, instead of round and flexible. They get stuck in the blood vessels and clog them. This can cause pain, infection, low blood count, strokes and other problems. The severity of the disease varies from person to person. For Zion, his condition resulted in dangerously critical symptoms and complications.
Chim and Zion’s life quickly became consumed by constant crisis management. “He had so many hospital admissions that I knew we couldn’t live life like that,” Chim said. “I started to research how to get a lasting solution.” For Zion, that solution would come in the form of blood stem cell transplant—also known as a blood or marrow transplant—from a matched donor.
A miraculous match
To have a chance at living life free from sickle cell disease, blood stem cell transplant was the only option. The family received a lucky and unlikely break when Chim turned out to be Zion’s perfect 10 of 10 match. It is very unusual for a parent to be a perfect match for their child due to the nature of how HLA markers are passed down genetically.
“I think that’s the most miraculous part of everything that happened,” Chim said. “I told my husband I think that’s why I came to this earth. I couldn’t imagine who else could have been chosen to do this. The chance of a parent being a [full] match is so slim that it’s almost impossible.”
Despite this luck, the family had a final hurdle to face: the logistical and financial resources required to complete the life-saving procedure.
Related Donor Services to the rescue
Due to insurance issues and logistical barriers to having her blood stem cells collected at the center where Zion was receiving his transplant, Chim faced hurdles to moving forward with her donation.
“The first time they said I couldn’t donate in the same facility with him I was hugely disappointed. Because for me, we were together in this process, we were going to go through it together,” she said.
That’s where Related Donor Services stepped in. A Be The Match® program, Related Donor Services helps eliminate the logistical, financial and travel barriers to donation that patients and their families sometimes face.
“For us, Be The Match was the bridge between our problem and getting it solved,” said Chim. “In fact, I started to wonder if we were the only case they were managing because it was so one-on-one.”
One of the most moving benefits Related Donor Services provided to Chim was ensuring her presence at the hospital while her son received the donation.
“When I [re]gained back consciousness at the hospital in Philadelphia [after donating marrow] I’m like, ‘Oh my God, that’s my son’s life in a bag.’ I was just so excited to see him, to get to see him transform after the transplant. I got [to his room] on time and I just sat down and I watched him get a new life before my eyes. It was a terrific experience,” she said.
Zion’s Recovery: From surviving to thriving
After the transplant, Zion’s health improved dramatically.
“Zion now? On a scale of one to 10, he’s a 20,” Chim said.
Be The Match Related Donor Services helped Chim and Zion by facilitating the donation process and removing the barriers to transplant that nearly stopped the family from completing the life-changing treatment.
“Without [Relate Donor Services] this wouldn’t have been a success at all,” Chim said. “We saw Be The Match as the actual people saving Zion’s life because they went all out.”
Discover how Related Donor Services can help you
If you or a family member is having a related donor transplant, Be The Match Related Donor Services may be an option for your family. Related Donor Services assists with various aspects of the donation process including:
HLA (human leukocyte antigen) typing
Coordinating your family member’s donation
Coordination of travel and lodging paid for by Be The Match
Donor insurance to cover medical expenses
Ask your transplant team if they are using or considering the program. You can also learn more by visiting our Related Donor Services webpage at https://bethematch.org/patients-and-families/before-transplant/find-a-donor/related-donor-services/.
Originally Published at: https://bethematch.org/blog/donor-stories/a-mother-gives-the-gift-of-life-twice/