Raising children isn’t a job for the faint-hearted. And, in the case of the Taussig family, it’s exponentially harder; two of the family’s three sons have an eventually fatal genetic disease — Duchenne muscular dystrophy. The experience of having two children with very special needs led father Nick Taussig to document it through his moving documentary, A Space In Time.
Duchenne is a genetic disorder, although it can spontaneously occur. It leads, inevitably, to deterioration of all the muscles of the body, affects mostly boys (about 90%), and most are in wheelchairs by age 12 to 15. People with Duchenne rarely live beyond 40. It’s a relentless disease, and at the moment, there’s no cure.
“I realized as a parent that, in spite of professing to let my children find their own way, I had very clear ideas about how they should grow up —the education they should have, hobbies they pursue, values they hold,” Taussig tells Parentology about his boys, Theo and Oskar. “Such prescriptive parenting is rendered meaningless by a Duchenne diagnosis, as you’re forced to confront an alternate reality, to cast out all your expectations, and try and ground yourself in the here and now of your children’s lives —knowing they will not be with you for so long. This extends to discipline also, as it takes on a whole new meaning in the context of a life-limiting disease.”
Check out the trailer here, then learn more about the family and watch an exclusive clip from A Space in Time at the end of this article.
Building An Ideal Home
The Taussig family live in the UK, so health care is covered under the National Health Service. That is a huge benefit.
“I’m immensely grateful to be living in the U.K., supported by a national healthcare system which strives to give Theo & Oskar the very best care. It’s a bigger and harder fight in the U.S., in the absence of government support,” Taussig observes.
What the family did need, though, was a completely wheelchair and hoist accessible home. It needed to be one story with wide hallways. They also wanted lots of outdoor space so the kids could just enjoy nature and be, well, kids. They were lucky enough to find a local company willing to donate the labor and materials. And they hoped to build a space that could eventually house another family with the same needs, once the Taussigs moved on.
Their situation — living in a tiny space with two kids, a baby, and few amenities while the construction was occurring — is a familiar scenario. Add in the challenges of Duchenne, and it’s a family shown under extreme stress.
While the family plans for the future in the house and beyond, there is always the disease to contend with. And the youngest family member, Luca, is disease free, which adds still another element to the dynamic.
“The disease is the disease. They will lose the ability to walk, will need more medical equipment to support them and keep them alive, etcetera. To this end, as a parent of children with Duchenne, you know what’s coming and do need to prepare accordingly, to enable (not disable) them as much as possible. Luca, now 4, is already starting to help his elder brothers with things they can longer do,” Taussig says.
It Focuses on Character and Determination
The film isn’t about self-pity. One man with Duchenne, Jon Rey-Hastie, is in his 30s, happily married, and has a job. He’s also completely confined to his wheelchair, although he sees his chair as freedom, not a negative. He terms Duchenne, and being different overall, as a “superpower.”
“He has lived well beyond expectations, far exceeding the average life expectancy of mid 20s. There are a few with Duchenne living well into their 30s and even 40s, those in receipt of the very best care,” Taussig observes. “Jon was vital for the film, as he shows what is possible, if you have the will to live. The majority of those living with Duchenne are unable to summon the will to carry on, at the point where they are all but locked in, no muscles working anymore and wholly reliant on a ventilator to breathe.”
By the film’s end, Theo is using his wheelchair more often. But, both kids are still playing with the neighborhood children. They move into their newly renovated home. And Taussig sees himself as moving toward being a more general activist for the disabled (although he’s still involved in the fundraising efforts to find a cure for Duchenne).
“Oskar has a coexisting diagnosis of autism, and beyond this, I realize that disability has many faces, [manifesting] not only in the body but also the mind as clinical depression or other forms of mental illness,” Taussig says. “Disability touches us all in some way, urging us to be more thoughtful, compassionate, and tender.”
WATCH: Exclusive Clip for Parentology
A Space in Time documentary will be released for streaming on all major platforms June 1, 2021. Watch the exclusive clip for Parentology here.