customer story
Hayden: Standing frame for Lissencephaly
Hayden is a delightful 7-year-old boy who was born with a rare genetic condition called Lissencephaly. He also has epilepsy and global developmental delays. Hayden cannot stand or move independently and depends on parents, caregivers, and assistive devices for positioning and changing positions.
Lissencephaly is a rare brain disorder and is a term for a group of brain malformations where the surface of the brain has fewer or no folds. The brain remains small and smooth, similar to the early fetal stage. There are two types of Lissencephaly: Type 1, which is the classic form occurring in 1 in 85,000 births, and Type 2, which can occur in about 1 in 100,000 births. Typical symptoms include developmental disabilities, motor difficulties, epilepsy, feeding difficulties, and delayed growth.
When selecting a standing frame for Hayden, a supine standing frame was initially tried, where he was transferred to a lying position and then tilted into a standing position.
Unfortunately, Hayden found the transfer in the lying position and the tilting from lying to standing very stressful. He resisted and clearly expressed discomfort. After a trial period, his therapist, assistants, and family acknowledged that this was not a suitable solution for him.
Instead, a Bantam standing frame with a sit-to-stand function was tried. He was placed in a sitting position and gradually raised to a standing position with the help of electric elevation. This is a "natural" movement into standing, and it was evident that Hayden accepted and tolerated it in a completely different way. While standing used to be stressful for Hayden, his parents and school assistants now found standing training to be a positive and enjoyable experience.
"We play games while he is in the standing frame, which was not possible before…..
On Sunday, he stood for 30 minutes while we played, and he laughed and had a great time. And the other day, I took him into the bedroom to wake up his father. He has never been able to reach the bed, but now he can smile at his father at eye level”
Laura, Hayden’s Stepmother
A "shadow" tray follows Hayden’s entire movement from sitting to standing, allowing teachers to continue helping him with classroom activities in both sitting and standing positions. There is no need to move him out of the assistive device even if he needs a break from standing. This provides more continuity and fewer interruptions for Hayden himself and others in the classroom.
The controlled sit-to-stand movement in the Bantam allows for full stretching while standing without Hayden feeling like he is tipping forward. Every day he uses the standing frame, he is encouraged to actively participate in the movement from sitting to standing. The combination of increased standing training and other exercises has had a positive impact on his motor development, and he can now pull himself up to a standing position without assistive devices. What an achievement!
Standing training has become an integrated part of Hayden's everyday life at home.After 1 year of standing training with the EasyStand Bantam, they have observed positive development in Hayden.
He can now stand with full extension in the hips and knees, and they have gradually reduced the support over his chest as he has become much stronger in the upper body. He has grown taller and stronger. Daily activities require less energy from him, and he generally tolerates participating in more activities throughout the day.
