A Hayward family is trying to save their nine-month-old baby who was diagnosed with a rare form of leukemia. The family hopes to find a bone marrow or stem cell donor, but because of the pandemic registration and community outreach has suffered.
The baby’s diagnosis came earlier this month. Siblings are the best match but he’s an only child so now, a call to find a donor like him of Filipino descent.
“He is literally our dream come true,” said Eric Ison of Hayward.
It was love at first sight for father Eric Ison. He and his wife have tried to have a baby since 2012 and after a Hail Mary IVF treatment, Alexander Justin, or AJ, their miracle baby was born in January.
“It was everything you thought it would be,” said Ison. “He’s beautiful and smart and playful.”
Last month, the growing boy began turning down bottles and spitting up food. He was first diagnosed with pneumonia but antibiotics did not help. In the emergency room, an oncologist told them AJ had leukemia.
“It doesn’t feel real until it’s your own child,” said Ison. “We were afraid we were going to lose him.”
AJ has acute myeloid leukemia especially rare in infants. The cure rate is 65 percent.
“We are fearful and I’m crying and I’m begging his medical team to save his life,” said Ison.
Doctors say in order for him to be cured he’ll need a bone marrow or stem cell transplant from someone just like him of Filipino heritage with the same antigens.
“Some of them are only found in the Filipino community, they won’t be found in the Chinese or Vietnamese community, or Caucasian community,” said Carol Gillepsie of the Asian American Donor Program.
The Asian American Donor Program said Filipinos make up less than half a percent of the national registry.
“The only thing I can say is maybe they just aren’t as aware,” said Gillepsie.
Covid has hampered the nonprofit’s ability to educate and seek out donors. Registration overall is down 50 percent.
AJ just underwent his first round of chemotherapy with more rounds to come. At nine months old, he’s facing one of life’s biggest challenges. His family won’t give up fighting.
“We need to look through thousands and thousands of candidates to find that one needle in a haystack. I need your help. Please sign up and maybe you’ll be the one to save his life,” said Ison.
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Babies are the most adorable one and when I learned of AJ’s situation I said, I will help only to find out that I am not favored due to age requirement. This break my heart, but I will be praying for Baby AJ. Baby God loves you.
Thank you Dan, I too am too old to register but you ARE helping by caring and sharing and commenting, bring attention to the need for donors.
I just requested a kit. Is there any way to expedite this to see if I’m a match for him? I also sent this to my family as well.
Thank you for requesting a kit Jess, there isn’t a way to expedite, but it doesn’t take very long.
does anyone have an update on this ? I posted it a month ago and am hoping there is good news… will repost if still no donor has matched…
Hi Jenny, AJ is going in for second round of chemo, and as of now no donor has been identified. I wish it was better news, but hope is still here.
Hi Jenny, AJ is back in the hospital receiving his second round of chemo. He did well, but he is still looking for a donor. It is going to take Be The Match 6 to 8 weeks to identify the HLA antigens on the people who are registering now, then list them on the Registry. Fingers crossed that a donor will be found when his body is ready.
I just requested a kit and I am hoping I can be a match. I also want to help spread awareness so we can get more Asian Americans signed up.
You are wonderful. On behalf of all searching patients, I thank you. I received a call yesterday about a person who was just diagnosed with this awful disease. We won’t stop until every person in need of a donor finds a match. Thank you for your help.
I am already signed up on BE the Match, and come from filipino descent. I just want to make sure that Be the Match organization is checking all donors. I signed up over 20 years ago. Just want to make sure.
Thank you Cris, Yes BTM is checking all potential donors.