If students are interested in anything music related here on the Sierra Pacific Campus, the one person to go to would be Jeffery Detlefsen. He is the school’s music teacher and band director, but that is probably the least interesting thing about him.
Detlefsen has a long history in music with many musical accomplishments such as being the Fresno State Marching Band President his senior year of college, performed as a member of the 2008 Beijing Olympics Orchestra, being the founder of the South Valley Winter Arts Association, and is the current President of the California Band Directors Association (CBDA).
Detlefsen spends most of his time at school making sure his students are well trained and ready to perform. When Detlefsen is away from school and not juggling the important tasks he has to fulfill, he is spending his time with his wife and three daughters: Ellie, Hannah, and Makayala. His daughter, Hannah, was actually born with a rare genetic disorder named Gould Syndrome.
This genetic disorder is so rare that it is estimated less than 200 people worldwide are affected by this syndrome, which is a mutation in the COL4A1 or COL4A2 genetics. This genetic disorder can affect many different organs and causes lots of complications for the person affected and their families.
There is little known about this syndrome due to its rarity. Detlefsen was asked what he wished people knew about Gould Syndrome and he answered with. “I wish there was more for people to know. It’s such a rare syndrome that not much is known about it at all. Even the expert Dr. Gould knows little about how it all reacts and works. Every person diagnosed with Gould syndrome is very different, and it all depends on if they had a stroke, and how serious of one it was.”, showing just how little is known.
Detlefsen and his wife, Mary, having to experience the hardships of having to raise a special needs child have used their knowledge and resources to other special needs families in their community with the help from close friends and family.
In 2018, they established a non-profit organization, Hannah’s Helpers. The organization is dedicated to spreading awareness towards Gould Syndrome and working to increase accessibility at friendly family locations throughout the Central Valley.
It all started with an annual project to provide meals and holiday cheer for the members of the Community Regional Medical Care. Their work and goals began to expand as the organization realized there was a lack of resources and accessibility in their community.
The parents knew there were other families struggling and having to go through the same struggles so they started to raise money and take in donations to help those children and families. They collaborate with different locations throughout the area to help better these places and help accommodate for those special needs.
Detlefsen has described the journey of Hannah’s Helpers as “great” and “heart warming” as he recognizes the growth from it starting with handing out meals at a hospital to now constantly delivering to food pantries and pillowcases for patients.
Although Hannah’s Helpers has come a long way, there is still much more to be done as Detlefsen wishes “for all locations around us to be accessible and easy for all families to attend” and “for all new construction to think about accessibility of special needs families in their designing and construction phases.”
Though it may be hard to accomplish, Detlefsen and everyone at Hannah’s Helpers knows when they advocate for special needs families, they are making a difference and taking a step forward to making the world more accessible for everyone.
If you want to know more about Hannah’s Helpers and their on-going projects, visit https://hannahshelpers.org/.