Community Unites to Support Canterbury Boy’s Vital Therapy

A young boy from Darfield, New Zealand, is set to travel to Brisbane for vital physical therapy, thanks to the overwhelming support from his community. Cole Sheen, who has a rare genetic disorder known as WITKOS, will depart on Friday with his family to access treatments that could significantly impact his quality of life.

Cole, who cannot walk independently but can crawl, relies primarily on a tube feeding system connected via a mechanical pump that delivers nutrition directly to his stomach. After an arduous seven-month wait following his birth, Cole’s condition was diagnosed, requiring DNA analysis at the rare diseases center at Helsinki University Hospital in Finland. His mother, Anna Sheen, noted, “Because it is so rare, they have only done two or three research studies, and they have very small sample sizes.”

While the family has gleaned some information from a private Facebook group for others facing similar challenges, much of their understanding has come through personal experience. “We just follow (Cole’s) lead basically, and Cole will be Cole,” Anna explained.

Cole’s primary medical challenges have involved respiratory issues, particularly during sleep. He occasionally uses a CPAP machine, which he dislikes due to the discomfort of wearing a mask over his nose and mouth. Despite these hurdles, Cole participates in three part-days a week at Annabel’s Educare kindergarten and plans to begin at Darfield Primary School next year.

Community Fundraising Efforts Fuel Therapy Costs

The financial burden associated with Cole’s treatment is substantial. The total cost for therapy and travel is approximately $30,000, which the family must raise independently. With a generous $12,500 donation from the Malvern Lions and other fundraising initiatives—including a clothing sale in Lincoln over the weekend—Cole will now receive an additional three weeks of intensive therapy at the NAPA (Neurological and Physical Abilitation) Centre in Brisbane.

Earlier this year, the family raised $4,170 through a Givealittle page, and $17,317 from another campaign last year aimed at helping Cole learn to walk, talk, and feed himself independently. Anna expressed frustration with the limited access to physiotherapy, stating, “We have a physio allocated to us, but she can only see us every three or four months.”

Reflecting on their previous visit to Australia in May, Anna described her astonishment at the level of support families received there. “The families going to NAPA had everything paid for, and they were going three to five times a year,” she said. She met several families who had moved from New Zealand to Australia for better access to necessary resources.

Anna hopes that increasing awareness about such conditions will lead to improvements in support for families in New Zealand. “Hopefully, with more people talking about these things, change might happen,” she remarked.

As Cole and his family prepare for this crucial journey, the community’s unwavering support exemplifies the power of collective action in addressing the needs of those facing extraordinary challenges.