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Huzaifah’s Story: Boy with Rare Disability Learns to Walk in Ten Days

This winter we had Huzaifah, a child with a rare genetic condition, come to the Spiral Movement Center for a 10-day intensive. Huzaifah’s story is a remarkable mix of medical science and holistic somatic intervention. Our work with Huzaifah demonstrated how somatic experiential learning can bring new post-surgery rehabilitation opportunities for children with severe disabilities.

Born with AADC (Aromatic L-amino acid decarboxylase deficiency), Huzaifah did not have the neurotransmitters necessary for motor development. For the first 6 years of his life, his body was virtually in a vegetative state and even the smallest movements were impossible for him to make. He couldn’t sit, lift his head, eat, or talk, and often suffered from oculogyric crises where his eyes would become frozen and roll upwards for hours at a time. It was a very tragic situation for his family because AADC children are thought to be cognitively normal—they experience life internally as we all do but are unable to express their true thoughts and feelings.

A new pioneering genetic therapy developed by a team of Polish doctors was administered to Huzaifah two years ago. This novel procedure involved injecting a virus with the genetic code needed for neurotransmitter creation into Huzaifah’s brain. Within a few months Huzaifah’s brain was flooded with the new neurotransmitters. The results were virtually immediate. Much to the joy of Huzaifah’s parents, movements began to appear spontaneously within Huzaifah, but unfortunately they presented a new problem as well. Huzaifah entered into a period of dyskinesia, lasting several months, where his entire body was racked by a constant stream of involuntary movements—twitching, kicking, flailing uncontrollably, often accompanied by lots of screaming and yelling.

Using somatic intervention for children with AADC has shed light on the experiences of children like Huzaifah. Through Adapted Spiral Praxis, we have been able to help children through the dyskinetic phase of Gene Therapy and to avoid potential pitfalls such as scoliosis, limb misalignment, imbalanced muscular development, lethargy and stimming behaviour, and other potential physical challenges. Working closely with a group of AADC children in the UK, Australia, Canada, and the US, we been able to help them not only tide over the dyskinetic phase of gene therapy but also to accelerate their motor learning process when they are ready to learn. Because AADC children often exhibit very advanced learning skills, understanding the cognitive side of these children’s development has been crucial in developing the right approach to therapy.

Huzaifah’s learning to walk is more than just about his own embodiment. The effects on his long-term care and on his family will be immeasurable. Huzaifah’s care is not only dependent on his parents, Sehrish and Shobi, but also affects his siblings and extended family who all actively participate in Huzaifah’s well-being. For example, we often used activities created by Sehrish and her children to start Huzaifah along his intensive—e.g., crawling over obstacles to challenge his floor locomotion or placing objects in high places to get him to try standing. During the intensive, we made this zoom call to his extended family—their joy and enthusiasm watching Huzaifah’s walking progress is unmistakable and speaks to the enormous effort and care that the family has put in.

The film below, recorded during his 10-day intensive, chronicles the story of Huzaifah’s recovery, nearly 2 years after his gene therapy. It shows how, with the help of somatic experiential learning, he was able to learn how to stand and walk over a period of just 10 days. The film is thus a testament to how modern medicine and holistic somatic healing in an intensive format can work together to create incredible, dramatic changes in the course of a child’s life. Footage was captured by our long-time cinematographer Kimberly Floeser with help from our collaborator Grecia Quiroz. Striking a delicate balance between capturing moments without interfering with the child’s learning process is the main challenge of filming. Both Kimberly and Grecia were actually part of therapy sessions to facilitate this process and their presence can be seen in the footage.

 

Intensives at the Spiral Movement Center consist of 2 weeks of very close contact between staff and family. There were many magical moments during the interventions that we could only just touch on in the film. First was the extremely close relationship that existed between Huzaifah and Sehrish. For many families, the relationship between mother and disabled child is one that involves extreme empathy—both people can feel the emotions and thoughts of each other. For Sehrish, this meant that her mood was often connected to Huzaifah’s successes and failures, sometimes veering towards depression. She writes:

When you see a child who is biting the hand out of frustration all day, and on top of that, you’re supposed to look after everything else. I wasn’t able to go sleep even at night. My mind was constantly on the go to trying to figure out what could I do. I would just literally go on Google and try to figure out different therapies that could get out of the frustration. Even at this moment, a lot of AADC families are stuck with the children where they have no idea what to do, how to bring their children forward and they are in their own lives. So the parents are stuck with nothing. Like how can you [look] at your child being stuck at one point? It just breaks you down completely.

Sehrish’s challenges with Huzaifah underscore the vital importance of having an effective modality of therapy and a powerful community of support. We always seek to empower parents to continue at home the work we begin in the intensive — Huzaifah’s first steps walking are really just the beginning of a longer journey of growth for him. We all enjoyed connecting with Huzaifah’s playful and driven personality and look forward to seeing him make further progress with the help of his family.


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