I have never really had a close relationship with another human being deemed by society as ‘very disabled’ so I took for granted the physical ability to walk, run, dance, and speak. I also unconsciously took for granted my being ‘normal’ as deemed by society. In my defence, I have always thought of everyone including myself as disable in one aspect or another in terms of capabilities that I never really looked at the obvious disability in terms of physical ability. All that changed when I met Tessa Tuboda, her husband Isaac Kataboi and their one and only son Ralph Kataboi. Tessa is from Milne Bay Province and Isaac is from Sandaun Province. They live with Ralph in my hometown Alotau.
Ralph was born a healthy baby boy on the 13th of December in 2006 bringing much joy to his family. Three days later he developed *Jaundice which should have been a normal ‘mild’ condition for newborn babies where their skin and the white part of their eyes have this yellow tint. Jaundice occurs because the baby’s body has more bilirubin than it can get rid of. Bilirubin is a yellow substance that’s made when the body breaks down old red blood cells. It leaves the body through urine and stool. A pregnant woman’s body removes bilirubin from her baby through the placenta. After birth, the baby’s body must get rid of the bilirubin on its own.
In most cases, babies have what is called physiologic jaundice. It occurs because their organs aren’t yet able to get rid of excess bilirubin very well. This type of jaundice usually appears about 24 hours after birth. It gets worse until the third or fourth day, and then it goes away in about a week. However, Ralph’s condition was much more serious. His skin got more yellowish, he was sluggish, he could not breastfeed and he would arch his back and cry in a very high pitch. Ralph’s bilirubin level was even higher. This rare condition even with phototherapy treatment eventually led to brain damage called kernicterus resulting in *cerebral palsy – a neurological disorder.
Cerebral palsy causes physical impairment by affecting the muscles and the person’s ability to control them. Diagnosis is based on the child’s development over time. Today, nine year old Ralph’s cerebral palsy has made his limbs stiff and awkward. His balance, posture and coordination have been affected. His oral motor functioning has also been impacted. Tasks such as walking, running and speaking are difficult for him. However, he is one of the liveliest children I have ever met. His smile can light up anyone’s dull day accompanied by those happy shining eyes. He loves his ukulele, playing with his friends and his building blocks. He has a big appetite and truly has a larger-than-life persona seeing himself as anything but disable.
I believe he owes this bright outlook on life because of his loving, patient and understanding parents who would go to any length for their son. They decided to not have any more children after Ralph so they could give him all the attention he needed. As Tessa put it, “looking after one disabled child is equivalent to taking care of ten normal children”. But she adds that it has gotten easier the older he gets and with all the training and awareness carried out by Callan Services over the past two years. He loves attending school at Callan Services and enjoys rides in his stroller. He acts his age and prefers being treated his age which is fine by his parents who treat him as they would any normal child.
His parents only concern begs the question of whether or not he would be able to take care of himself in the future should anything happen to them. So they are doing everything they can to help him be more independent. The exact cause of Ralph’s cerebral palsy is unknown or simply assumptions for now. To be able to diagnose the cause, Ralph has to have proper medical imaging (for example, a brain scan) and blood tests. Tessa and Isaac are now raising funds to take him to the nation’s capital for a proper brain scan which will help the doctors diagnose the cause.
A fundraising dance will be held for Ralph at Alotau’s local club Cameron Club on the 23rd of January, Saturday night. Please come along, have fun and support a good cause. Cerebral palsy may be permanent, chronic and incurable but it is manageable. Help Ralph get the treatment and therapy he needs to help manage the effects on his body.
* To read more about what Jaundice is head to http://www.webmd.com/parenting/baby/tc/jaundice-in-newborns-hyperbilirubinemia-topic-overview.
* To read more about cerebral palsy, head to http://cerebralpalsy.org/about-cerebral-palsy/definition/