Waiting for Arend Agulhas' stem cell match
Follow his journey on Instagram @ArendAgulhas
When Arend was in utero, his mom was tested for preclampsia when they picked up on a pericardial effusion. The following day, his mom went into hospital and awaited an induction. Post birth he had many test and was ultimately deemed healthy; weeks later they said it was self resolved.
At 3 weeks, Arend was admitted to hospital and had a full sepsis workup as he had a high fever. He was treated for pneumonia and endured a 10 day stay in hospital.
At 4months old, he displayed symptoms of being sick; by 5months he has swollen lymph nodes the size of golf balls. He was admitted to hospital where they treated him on two antibiotics through IV. When the infection was not resolving, him and his mom were airlifted to a children's hospital in Vancouver where they ran a CT scan to find out the infection had turned into abscesses in his throat. He went into surgery immediately and the accesses were drained.
Following surgery, he was diagnosed with CGD. Chronic granulomatous disease (CGD) is a genetic disorder in which white blood cells called phagocytes are unable to kill certain types of bacteria and fungi. People with CGD are highly susceptible to frequent and sometimes life-threatening bacterial and fungal infections. He endured a one month stay in isolation (for half the stay due to COVID) in hospital while he fought off his infection. He also had a blood transfusion during this time.
Arend is now at home, in BC Canada, on prophylactic medication and we have many restrictions to our daily life. As he is susceptible to fungal and bacterial infections, we have to keep him in a very clean environment. Living with CDG during the pandemic has been a difficult lifestyle for him and their family.
As of now, Arend does not have a match in the database for a bone marrow/stem cell/cord blood transplant, which is the only way to cure his disorder. We are waiting until the donor registers and we hope to have the transplant done in time for him to heal so that he can start school at 5 years of age.
Our family is of mixed-ethnicity and so we are campaigning to raise awareness for people to join as it will be harder for us to find his match. Our call-out goes to Latvia, South Africa, The Netherlands, France, Germany and Brazil; but many mixed-ethnicity families are under-represented and they need your help. Be their HERO.