Sara is very nearly fifteen months old. She’s unable to sit, stand or walk under her own power, but in the NF-Walker she can stand in an upright position with full weight-bearing, leaving both hands free. Sara and her physiotherapist, Britt Tornes, first met when Sara was a young baby and together they’ve created some very big, important goals.
All Children Should be able to Stand
Sara has a very rare condition known as CDG-la (Congenital disorder of glycosylation type la), which influences the metabolic system and the body’s production of glycoproteins, special kinds of proteins with attached carbohydrates. There are very few children diagnosed with CDG and consequently clinical experience in treating CDG is limited. Annually, an average of just 1 in 50, 000 children are born with the condition in the whole of Northern Europe.
“All children should be able to stand up and move around when they are Sara’s age - we are absolutely made to move”. These are the words Britt Tornes uses as the foundation for her therapy program for Sara and the reason Sara is encouraged to enter into a weight-bearing, standing position every day. This means Sara can play with the other children at her kindergarten.
Safe Weight-bearing for the Muscles, Joints and Skeletal System
“No movement aid on the market, except the NF-Walker, gives children the opportunity for weight-bearing in such a stable, strong position for the joints” explains Tornes. She says Sara has no independent walking function or ability to stand, but displays signs of trying to walk when offered support.
“If she is to achieve independent movement in the future with, for example, a walking-aid, it’s wholly dependent on any faults in her posture being limited or prevented as early as possible. The corrected position the NF-Walker allows Sara to achieve gives her the support she requires to be able to stand and, gradually, move around. In the NF-Walker the skeletal system is provided with the necessary resistance and joint variations required for functional development.
It’s About Being Visible - Not Invisible
“Being in an upright position has given Sara a new lease of life” say the staff working at her kindergarten - “the other children are curious when she is better able to play with them”. Toys are regularly placed on the table in front of Sara and the other children can play together with her, instead of around her. This makes Sara visibly light up, she smiles and clearly thrives on the opportunity to be in an upright position and at the same eye level as her playmates.
We don’t know too much about what the future holds for Sara, but we do know that all the extra physical activity has had an extremely positive effect on her cardiovascular system. Her skeletal system, muscles and joints, receive safe and comfortable resistance and weight-bearing. The kindergarten staff have observed that the dynamic position provided the NF-Walker has helped to stimulate Sara’s digestive functioning also - “when we stand and eat, gravity is able to encourage her swallowing action, along with other challenges connected to eating” Britt Tornes explains.
The NF-Walker is the ‘carrot’
“When Sarah and I train together, she obviously gets tired. But this is when the ‘carrot’ of being able to stand is brought a little closer by bringing out the NF-Walker”. Tornes meets with Sarah twice a week, but Sara uses it several times throughout a given day. The plan is that the device can be with her at home during the weekends as well. “Without a shadow of a doubt, it has drastically improved Sara’s quality of life”.
If you would like to hear more about Sara and her parents’ experiences, you can follow their blog here.
This article was first published in 2014. Today Sara is 4 years old and masters the NF-Walker with admirable skills.