Help create independence for young learner

THE family of a young girl, who was diagnosed Bruck’s syndrome, has appealed to the public to help sponsor an assistive device that will help her write. The much-needed piece of equipment costs R22 000.

Craylin Marais (6) was diagnosed with autosomal recessive syndrome which culminated in bone fragility and congenital joint contracture shortly after birth.

Her father, Craig, said that as a result of the condition, Craylin has weak limbs, reduced mobility and abnormalities at her joints.

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“She is unable to walk or use her arms. She uses an electronic wheelchair that she controls with her mouth. At the moment, she holds the pencil in her mouth and this is how she writes. This method is not sustainable as she progresses into higher grades, the volume of work will increase and she will be unable to keep up with the required pace of work,” he said.

Explaining Bruck’s syndrome, the doting dad said it is an autosomal recessive syndrome that consists of bone fragility and congenital joint contractures. According to the genotype, it has been classified into types 1 and 2. He said one is the dysfunction of the nerves that results in the weakness of arms and legs, resulting in multiple joint abnormalities and reduced mobility at joints, called arthrogryposis multiplex congenita.

“The second component is osteogenesis imperfecta (brittle bone disease) which are weak bones that are susceptible to frequent fractures. Due to Bruck’s syndrome, Craylin struggles to get water for herself, dress herself or even hold her own belongings,” he said.

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The six-year-old is fully dependent on her family.

“Relocating from Kokstad was huge for us because we could not find a school that could accommodate Craylin’s needs. Relocating to Durban was in the best interest of Craylin, for her to have the best opportunity to go to a school where there are children with similar needs. Open Air school offers physio, occupational therapy and much more,” he said.

Craig said he would like to create a bit of independence for his daughter by gifting her an assistive device that she alone will be able to control with her mouth or head. This will also allow her to use an on-screen keyboard on a laptop or tablet.

“She also dreams of having her own children and to hold them in her arms. In the future, Craylin wants to become a speech therapist or a teacher, so that she can teach and motivate other children with the same or similar condition she has,” said Craig.

He said Craylin does not yet completely understand why she cannot walk or use her hands like her sister, or other children, and this frustrates her.

“Craylin has a very independent spirit and would like to do a lot on her own and does her best to be independent. This will be her method of output. We will need to trial certain devices to ascertain which will work best for her,” he said.

If you would like to find out more or to help Craylin, email fphod@openairschool.co.za.

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