Fred with spina bifidaFreddie welcomes anyone who comes to their home with a big smile. His school boy face always beams with it. He looks very normal until one looks at how he moves on the floor. He drags his body and his lower limbs with the use of his arms. His lower limbs show one leg that is fully developed while the right leg is malformed. The foot is dangling from the ankle down. He is suffering from spina bifida myelomeningocele, a medical condition that strikes three out of every 10,000 infants. Spina bifida is a birth defect where the bones of the spinal cord do not fully form. The spinal cord and the nerves protrudes into a sac is seen on the back. As one carefully observes, one can see the protrusion in his back but he doesn’t seem to be self-conscious about it to people. His mother intimates that from birth he has no bladder or bowel control as well as loss of sensation of his limbs especially his right leg.

Freddie chatters about how happy he is that people visits him and his family. He apologizes with a big smile on his face about how not good his language is. As one listens to how the rest of the members of the family speaks Bahasa Malaysia, he is far better than the rest. When one compliments him about it, he would shyly say that he can only speak. Freddie doesn’t know how to read, write or count. He laughs softly and said that he feels like he is the youngest among his brothers as he is the smallest and the only who had not been to school. He desired for a long time to be like his three other brothers who can walk, go to school, learn to read, write, and count. He asked us if we can teach him how to read and write once a week. Our hearts melted at his request.

Once a week we visit Freddie and his family and taught him together with his siblings and neighbour’s children who can recognize the alphabet but can pronounced each letter properly. Two meetings after, his mother and grandmother joined them in learning the sounds of the alphabet and in writing. Each week, Freddie got more and more familiar with the alphabet, its sounds and numbers. He learned how to write his name nicely and neatly.

Freddie with crutches

Freddie said, God had made his little dreams come true with the help of so many people. Now he can walk with support, travel distances, read, write, colour, and has made a lot of friends.

After four months, through one of our volunteers, whom he calls as the “Tall brother”, referred his case to the Spina Bifida Association of the country. A team of doctors did several tests on him to find out how he can be helped in controlling his bladder and bowel, and how he can be use his limbs to walk, stand and move around. They did surgery on his limbs tried to put a steel support to the limp limb but it wasn’t successful. The doctors though customized an outer support for both of his limbs so he can stand and move around using the customized crutches. A wheelchair was also custom made for his size for long distance travels.

In one of our hospital visits, he showed us how he can use the physical supports made for him. His smile was from ear-to-ear as he wheeled himself on his wheelchair and stood using the leg supports. He bragged that he is no longer embarrassed in asking his mother to clean him as he had learned how to control his bladder and bowel. Freddie was also referred to a rehabilitation institution that not only teach him to strengthen his upper and lower limbs but also taught him to read, write, count, and do arts. They also gave his mother a job at looking for physically/mentally challenged children while he is having his rehabilitation session. Freddie said, God had made his little dreams come true with the help of so many people. Now he can walk with support, travel distances, read, write, colour and has made a lot of friends. Freddie and his family were greatly thankful to the many people whom God had used to help him. They were told that there will be other surgeries that might be done for his mobility and to help lengthen his life but Freddie say God provide and takes care of him.

CategoryLife stories

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