Since January 2023, the seven-year-old has experienced what it means to be independent despite complex disabilities and to be able to go wherever he wants. Amin's mom tells his story, about her own challenges and hopes for the future.
Amin's story
Amin was born as a twin in 2015. The pregnancy was normal, and the babies developed as expected until his mother contracted an infection in week 29, leading to the premature birth of the children. They were immediately taken to the intensive care unit. Amin's twin brother recovered quite quickly, while Amin needed continuous oxygen. Apart from that, Amin developed like his brother until he was 8 months old – he could see, grasp, suck, and drink. The only thing he needed was a feeding tube due to the need for oxygen. His mother described the perception of time as "Yes, he's sick, but he can handle it." Permanent limitations were not something discussed at this stage.
Unfortunately, Amin's condition deteriorated after a transfer to the hospital, where his lungs stopped functioning, and efforts were made to resuscitate him for 45 minutes. The result was paralysis of the left side of his body. He couldn't hold up his head, move it, or grasp objects, and he was very stiff. All movements were an extreme strain on his lungs. Phases of coma followed, infections, ultimately organ failure, and even blindness.
As soon as he took two steps forward, he was thrown three steps back
After 13 months at the clinic, the parents decided to take Amin home. It was an important decision for the well-being of the whole family. His mother recounts, "Amin received many medications at the hospital, including morphine. We had to slowly wean him off it at home. It was like drug withdrawal." After that, very slowly, they could see Amin making small progress – progress that no one had thought was possible.
"Amin is a real fighter"
Amin was a very strong-willed boy from birth. He began communicating and showing what he wanted through head movements and facial expressions. Various interventions yielded early progress, and today he is always in good spirits – a happy and attentive boy. He loves it when you jump on the trampoline or dance with him. He has been attending school since last summer. There, he receives all necessary interventions, such as physiotherapy, occupational therapy, and speech therapy. Due to his motor limitations, much of the work is done with his hands and legs. Amin hasn't started working with his hands yet, so the focus is on touching and gripping objects. Walking is a whole different story. According to Amin's mom, you can feel his zest for life when he stands up and feels his feet – he doesn't need much motivation.
At home, the family values spending time together and engaging in activities. Amin is treated as much as possible in the same way as his siblings. He only gets irritated and frustrated when he realizes he can't participate independently but relies on getting help.
Challenge accepted
Amin's biggest challenge was standing up and staying in an upright position. The initial attempts with various aids failed because the stability wasn't sufficient. As part of his rehabilitation, Amin got the opportunity to try the NF-Walker, and with it, he could stand upright for the first time. After using the NF-Walker for three years, he had made such great progress in his walking training that he no longer needed as much correction of his legs. Therefore, he switched to Xplore – with very successful results! Xplore corrects the lower body less but still provides the support for the upper body that Amin needs.
Also read: Xplore - a walking aid for big and small adventures
The quick adjustments and ease of adjustment motivate the use of the aid. Amin uses the Xplore walking aid every day as soon as he comes home from school and, of course, on weekends. He usually uses the aid for about three quarters of an hour each time. "He starts running right away, he beams and laughs! He takes off right away!" says his mom. Amin finds the other standing aids like the standing shell at school or the wheelchair boring – his favorites are his therapy bike and Xplore. With the latter, he now moves around the apartment completely on his own!
What expectations does Amin's mother have for Xplore?
"Flexibility and independence. I look forward to when the weather gets better and Amin can walk around the playground with Xplore. He uses his therapy bike, but walking is something completely different. He can walk anywhere on his own. That's what I'm looking forward to! Going out with Amin and Xplore. Instead of the wheelchair, we just need to pack up Xplore when we go to the zoo! I hope for his sake that he gets to see and achieve more. He can go wherever he wants.
Expectations for the future are difficult to articulate because the family is grateful for everything they experience with Amin. "Sometimes when we're in a bad mood, we look at Amin – and then we think: 'Yes, you give us strength, everything will be fine.' He can radiate so much positive energy when he smiles," says his mom.
We at Made for Movement would like to thank Amin and his mom for the insight into their lives – and we are sure: Amin and his Xplore will be a fantastic (adventure) team by this summer at the latest!
Here is the video with Amin and his mom.
