‘He can’t walk but I can’ - uncle to walk over 150km for nephew with rare condition

Staffie Otene is taking on the challenge for his nephew Boston. Photo / Whakaata Māori

Staffie Otene, of Ngāti Kahungunu, will walk from Rotorua to Taupō and back to raise funds for his 12-year-old nephew, Boston.

Boston was diagnosed with Spinal AVM last year, a rare condition which caused him to lose his ability to walk.

Otene explained, “Our nephew is in a condition where his AVM ruptured in his spinal cord, leaving him paralysed from the waist down for eight weeks.”

The surgery Boston requires is not available in Aotearoa, so he needs to travel to Arizona for the treatment. The trip is estimated to cost the whānau over $400,000.

“When my sister posted about Boston’s condition last year, something came over me, and I looked at my wife and said, ‘I’m walking to Taupō and back for our boy!’” said Otene.

Spinal AVM, or arteriovenous malformation, is a rare and abnormal tangle of blood vessels within the spinal cord. It is a congenital condition, meaning that it is present at birth.

Spinal AVM can cause a variety of symptoms, including pain, weakness, and numbness or tingling in the limbs. In severe cases, it can lead to paralysis, as in the case of Boston.

Other symptoms may include muscle spasms, difficulty walking or standing, and bladder or bowel dysfunction. Because Spinal AVM is a complex condition, treatment can vary and may involve a combination of medication, radiation therapy, and surgery.

The funds raised through their Givealittle page will go towards the cost of Boston’s surgery and accommodation, including at least two months of rehabilitation after the surgery.

Otene added, “It’s so hard because you have to pay for everything upfront, and we just don’t have that type of money, so any bit of help means so much.”

Otene began his walk on May 4 and aims to return by Sunday, of which Boston and his mum will be travelling right beside Otene in a car.