Help the Bothma Family with Medical Expenses

This fundraiser is to help Larisa and Emil navigate their baby Arend’s medical journey following a rare blood disorder, CGD, diagnosis that required him to have a Stem Cell Transplant (HSCT, BMT). 

Arend was diagnosed at 4 months old, after several complications and life threatening infections. Since then, he's been heavily monitored and involved with several departments at BC Children's hospital. After his diagnosis his family found out that there was not a suitable match for him in the international stem cell registry and they began to recruit stem cell donors across Canada, Europe and South Africa. It was with heavy hearts that they found out his sister was also not a match for him. About half a year later, a match was found overseas and Arend began his prep for a Bone Marrow Transplant.

In 2023, when he was 18 months old, he underwent a Hematopoietic stem cell transplantation (HSCT). He endured several early complications with the activation of a viral family for which the treatment can negatively affect the engraftment of his donor cells. The family remained living at the Ronald McDonald House BC & Yukon at this time. At around 4 months post transplant, his family learned that the donor graft was failing.

At this time, they were able to secure another donation from the same donor and therefore were able to offer him a Stem Cell 'Boost', (PBSC donation), without the need for further chemotherapy. Arend's body accepted the donor cells and they began to engraft.

Within months the donor graft started to fail again and the team initiated several experimental treatments to encourage the donor cells to populate. After living at RMH for 9 months, the family returned home. After 90 days, the treatment was stopped as the donor cells continued to dwindle and Arends original, and faulty, immune system was taking over.

Since then, the family has been living with great uncertainty of what comes next. At this point, they expect to do another Bone Marrow Transplant (BMT) but with the lingering trauma from the first time, this does not come lightly. The financial, logistical and mental load of this consideration will not come lightly.

The funds raised here have been to relieve the financial burden of being away from home and not being able to work until this time. This has meant that the family was able to stay together in Vancouver during the transplant. The additional funds have been used to help cover medication costs and the expenses of travelling back and forth to BC Children's in Vancouver every 2-5 weeks since 2023.

As their extended family lives internationally and neither Emil nor Larisa grew up in BC, they are relying on each other and their community for support. 

The coming years will be challenging time and they appreciate all the help. 

Follow Arend Agulhas journey:

Instagram 

Other ways to help: 

✅sign up to be a stem cell donor (visit https://wmda.info/donor/become-a-donor)

✅educate yourself and others about this opportunity (see ArendAgulhas on Instagram)

✅donate blood and platelets (In Canada, visit www.blood.ca)

✅help us share our story to raise awareness for the lack of diversity in the stem cell registry (see ArendAgulhas on Instagram )

What is our goal?

✳️to not only find a stem cell match for our boy, but to sign up hundreds (thousands?) of new stem cell registrants, so other patients don’t have to wait for their perfect match