There are so many ethical questions surrounding children and medicine (and medicine in general), so some might say that it’s not fair or right to ask a child who can’t really understand what they’re doing to consent to a bone marrow donation.
But when it’s for his little brother, who will die without it, the waters muddy significantly.
Henley Carey is only 18 months old, and today, he feels just fine. The reality is, though, that he has a rare metabolic disorder (it only affects 1 in every 88k kids) called Mucopolysaccaridoses (MPS). His life expectancy is around 10 years – unless he undergoes a successful bone marrow transplant, which could more than double his lifespan.
The genetic abnormality means that Henley’s body doesn’t produce the enzyme that breaks down sugar molecules. It causes swelling that impacts his heart, lungs, brain, bones, and connective tissue.
His 3-year-old brother, Darcy, will be donating his bone marrow – he had a 2 in 4 chance of having the same genetic abnormality, so they were lucky that he was a match at all.
Their mother Alicia, acknowledges that it’s hard to watch both boys undergo surgery, but believes that Darcy will one day be proud that he was able to help his brother.
If the operation is a success, Henley will have to remain in the hospital for three months, while the new bone marrow grafts. His immune system won’t be working until it does, so he has to stay isolated until his body starts to make more.
Alicia is asking for people and their children to send drawings for the walls, because they’re depressing and bare, and Henley loves looking at pictures. They’re from a small Australian town but are living in Sydney while they wait for the operation, and then the aftermath.
If you feel moved, you can check out their Facebook page, Henley’s Mission, and find ways to donate to their cause. COVID-19 has made in-person fundraising difficult, and it’s expensive to live out of town (nevermind the trick of trying to work while managing an extremely sick child’s care).
You can send drawings to this address: Henley Carey, PO Box 137, Coolamon, NSW 2701.
I, like most parents, struggles to even think about situations like these happening to our own kids, but helping other moms and kids out is half of what being a human parent is all about – I think my kids and I will do some drawings to mail off today.