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I woke up after my CS with pains and I thought to myself that I need to see my baby because I believed that would make me happy and recover faster. Just then, a nurse walked into the door of my ward with a baby wrapped in a shawl, immediately my instinct told me that was my baby. As the nurse came towards me, I said in excitement “this is my baby” and the nurse nodded in agreement. Guess what? I gave birth to a beautiful albino baby girl. I felt so surprised yet excited to see her. The nurse asked if my husband was an albino and I told her no, but he is a bit fair. She took my baby away so I could recover faster. When they left, I told myself that I must give her the best I have regardless…

Soon after, relatives and friends advised me not to give her salt as it can result to her having black spots on her skin. As a mother who wanted the best for her daughter I adhered to the advice. I will prepare her food separately without adding salt.

On a fateful day, I and my daughter went on a visit to my brother in-law’s house; I had left her with her cousins to play outside the house. When we were leaving, I discovered her neck, face and hands were red and she was complaining of pains on those areas. As we got home, I thought to myself what could have caused this redness on her body? She found it difficult to sleep that night and I was confused on what to apply to ease the pain so I gave her painkillers to drink.

I don’t joke with my daughter because she is my pride so I don’t like seeing her in pains or unhappy because it breaks my heart.

The next morning she broke out with a blister on her upper right arm. I became more scared and took her to the hospital were the doctor confirmed that the redness was due exposure to the sun which got her burnt. Afterwards the doctor gave some medications and educated me about albinism and the effect of the sun on her skin. He further explained to me that albinos lack the melanin pigment that gives colour to the eye, skin and hair so this makes them get sunburn which could lead to skin problems such as cancer. Hmmmmmm, I became curious to know if intake of salt has an effect on her skin and surprisingly she said that instead, lack of salt intake could lead to iodine deficiency in my daughter. From that day on, my daughter started eating food that contained salt while i tried my best to avoid her been exposed to the sun.

In her early days in school, she found it very difficult to see and copy properly from the blackboard. It was quite challenging for me because I have to be in her school every day to monitor and collect notes from other classmates so I can seat with her and make sure her notes are well written. It was difficult for class teachers to pay close attention to her as she isn’t d only child in the class. It gave so much concern so I kept taking her to the ophthalmologist for eye checkups. The doctor kept encouraging me not to fret about her sight because the absence of the melanin pigment in her eyes is the major reason she finds it difficult to see. He told me that the recommended glasses would help aid her vision. The struggle continued but I kept on monitoring her school work and pleaded with teachers to be more patient with her and pay close attention to her. Often times teachers complained she was slow in writing.

Gradually as years went by, her sight improved that i didn’t need to be going to her class frequently as I used to. She was able to cope with her sight and move at the same pace with her mates.
Due to the lack of melanin in my daughter’s eyes, I discovered she’s sensitive to light, she finds it difficult to see under the sun so I ensure she’s on sun shades, there is a continuous movement of her eyes back and forth in a horizontal movement and she needs to move very close to an object before she can see it properly.

As an albino mother, you don’t have to fret because it’s normal.

The following tips will help ease the challenges:
As the sun is the biggest enemy of an albino, it is expected that albino mothers make sure their kids are not under the sun during the hours of 11 am and 4 pm when the sun is at its peak. If for whatever reasons, an albino child must go out in the sun, protective clothing is worn and sunscreen is applied on areas exposed to the sun 10 to 15 mins before leaving the house. Try as much as possible to seek shade and use umbrella when you out in the sun with your albino child.

It is mandatory that every albino child visits the eye specialist from time to time so as to examine their sight and recommend glasses that would aid their vision.
Also, an albino mother must take her child to visit the skin doctor from time to time whereby a skin check is done so as to prevent any development of skin problems. As the saying goes prevention is better than cure. Due to the sensitivity of the albino skin, it is expected that as a mother you check with the skin doctor on what cream and soap is suitable for them.

To all albino mothers out there be strong for your albino kids and always have it at the back of your minds that albinism is not a disease but a condition that can be managed if we all adhere to

precautions.

Roseline Obadiuno

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