This story first appeared in the Information Point newsletter Our World in 2017, when Jona Watson told The Information Point about her nine year old son Jackson and the short film that had recently been made about his life.
Jackson is nine years old and is diagnosed with X-linked myotubular myopathy. He lives in Plano, Texas with mum Jona and older brother Reid who is 11. Jackson attends Davis Elementary school for the hearing impaired where his favourite class is science. Jackson and his family recently featured in a short film about his life.
The film was made by a group of Junior students from Plano West Senior High School for a film class – one of the students, Maggie, is the daughter of Jackson’s physical therapist. It was made to satisfy a major grade for their class in which the students had to spotlight an issue pertaining to their community.
Maggie has come to our house to observe her mother and fell in live with Jackson. She came up with the idea for the film based on her knowledge of some of the issues facing special needs kids and their families in Texas. At the time the Texas government had made major cuts to the Medicaid budget in order to fix the growing costs of Healthcare in the US, including the amount paid for and the granting of therapies for these children without looking at the fallout.
I became involved when Maggie and Tracy approached me with her idea for the film. There was a lot of emotion wound up in the film, pride and love for my one of kind kid and for the relationship between him and his brother. There was a lot of our journey brought up that was difficult to deal with emotionally, some sadness and frustration and a lot that was empowering.
I did wish that the questions given to us had stayed more on topic of the therapy cuts and less on our journey … that being said I was thrilled with the outcome. This group of kids did an amazing job and I’m sure they learned a lot in the process.
I would love for everyone to see this film, specifically the healthcare community and those in government who are making these choices based on false information, or at the very least not enough information. In the long run these cuts made willy nilly will cost more money than fixing the problems that are actually costing us all.
In the short term this film achieved exactly what it set out to do, put a spotlight on one of the most important aspects of our journey, therapies and teaching students a list of things they didn’t know before, all while letting some new people in on how awesome Jackson is, his journey, his life, and his day to day existence.
My favorite thing about the film was watching my boys and what amazing people they are turning into. Jackson loved being filmed, but I think he loved hanging out and showing off for the teens, especially Maggie, who he adores.