Everyone is the same inside
by Peter Tan. Posted on August 9, 2014, Saturday
WHEN Jee Abril Lien was born, she was diagnosed with spastic quadriplegia, a subset of cerebral palsy that affects both arms and legs. Abril is also legally blind and profoundly hearing impaired.
Cerebral palsy is a neurological condition that can occur during pregnancy, at birth or in early childhood. It is caused by damage to parts of the brain that control muscle movements.
The complications from cerebral palsy can lead to other issues such as speech, hearing and intellectual impairments.
Early intervention through therapies, medical treatments, assistive devices and support for the families is crucial. It improves developmental rate, maximises abilities and enables the child to be more independent for a better quality of life.
“My husband and I were heartbroken when the doctor told us about our daughter’s condition,” Magdaline Puyang shared. “We did not know what to do. It was so difficult for us.”
Magdaline and her husband Jee Fox Yao are from Miri. She left her job to care for Abril full-time while her husband works offshore in the oil and gas industry.
Following the doctor’s advice, they have been sending Abril for physiotherapy, occupational therapy and to a community-based rehabilitation (CBR) centre. These have produced positive developments.
“Abril’s limbs used to be very stiff but the spasticity has reduced after undergoing the therapies,” said Magdaline.
Being the main caregiver to Abril, Magdaline feels that it is important to have specialised respite care for disabled children which at the same time provides a temporary break for caregivers, if anything, to run errands and buy groceries.
“For example, not everyone knows how to look after Abril when it comes to feeding her with milk or food. She is three now and I have difficulty taking her out because she has grown.
“Sometimes when I am driving and she cries because of a spastic attack, I have to stop the car to help her relax.
“Parents always complain to me that when they need to go out, there is nobody to look after their children, especially single parents.
“We also need an administrative office cum activity centre for children with cerebral palsy that can also provide moral support and guidance to parents in managing their children.”
She and her husband are saving up for Abril’s future but they do not want to think too far ahead. The subject of their child’s welfare after they are no longer around is a matter that is difficult for them to deliberate on at the moment.
“No matter what, we will always love her,” Magdalene added.
While researching for more information on Abril’s condition on the Internet, Magdalene came across the Malaysian Advocates for Cerebral Palsy (MyCP), a parents and family support group with children who are similarly afflicted.
MyCP began on Facebook (www.fb.com/mycpmalaysia) in 2012. The online group now has over 1,000 members comprising medical specialists, therapists, researchers and government officers.
It was officially registered with the Registrar of Societies in December 2012 and currently has 250 registered members. The association aims to provide support for persons with cerebral palsy and their families as well as promoting the exchange of information and advocating for their rights.
The association has been actively organising public awareness programmes and seminars to educate the public on cerebral palsy, and fundraising events to finance its activities.
“Sometimes, I become stressed when Abril is sick. The mothers from MyCP support me emotionally. I have learnt a lot about cerebral palsy since joining the group,” said Magdaline.
“The parents in Miri got together and formed the Sarawak branch of MyCP in 2013. We currently have 13 members. I was appointed as the representative for the Sarawak zone.
“My responsibilities include monitoring the needs of the association as well as supporting the activities in the zone.”
Magdaline has been encouraging parents of children with cerebral palsy and those with other impairments to register with the Department of Welfare and also with the CBR centres so that they can get the needed therapies and support.
“So far, I have helped three families register their child with the CBR centres. They were not aware there are such centres for disabled people.
“Some parents do not want people to know they have a disabled child. They do not want to send their child to CBR centres. My advice to these parents is that these children may be different on the outside but on the inside they are no different from anyone else. Please open your eyes and do what is best for them.”
As part of MyCP’s Outreach Programme and in conjunction with MyCP’s Sarawak zone Hari Raya Aidilfitri celebration, the association will present 16 customised wheelchairs to its members’ children in Miri on Aug 24 at the Petronas Sports Village.
Miri Mayor Lawrence Lai has been invited to grace the occasion and will be giving away the wheelchairs.
These refurbished wheelchairs from Japan were contributed by Alumni Look East Policy Society (ALEPS). Parents have difficulties acquiring such wheelchairs as they are expensive and difficult to source.
In view of that, MyCP decided to deliver the wheelchairs to its members in Sarawak for the use and benefit of children with cerebral palsy.
Members of the public interested in attending the event can contact MyCP at firstname.lastname@example.org or visit the Facebook page for more details.
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