HeartFelt

SYNDROME OF CHARITY

If given a chance to choose where and who we would want to be right from birth, as human beings we could have chosen the best there is on earth for ourselves. Fortunately or unfortunately, that is not possible and never will be. What we have control over is where and who we would want to be as we grow up. So that leaves us somewhere in between luck and favour during conception and later, birth. Some are born with the rudest of health and into the wealthiest of families but not so for one Susan Mwihaki.
Susan is a one year and seven month old baby girl who was born in an under-privileged family in Marurui slums. She was born with a condition known as Down syndrome.  She is the second last born among nine children born to two parents; a mother who is very hard working and a father who is pretty much the opposite.
Personally, I had heard about Down syndrome, but I didn’t know what kind of a condition it was until Anne called me to tell me that she was helping a baby get proper medication for the condition. Anne is an old friend of mine. For the years I’ve known her, I didn’t know she had a passion for helping people who are under-privileged. In fact she says her nature is just to help anyone who goes to her for any assistance. Though it’s not as if baby Susan went to her asking for help or even her mother or her elder sister, Njeri.
Anne does not live in Marurui but occasionally goes to a church there. Every time she is there, Njeri comes carrying Susan and hands her over to Anne.
“I care to ask why she does that.”
“You see Susan’s mom is already burdened by her last born, a four month old baby boy…” she said.
“Does he also have any condition like Susan?” I asked.
“No!”
“Oh okay, go on please,”
“So Njeri takes care of her small sister in a way to fill in for her mum. She is always with her. She even doesn’t get time to play with other kids.”
“To play with other kids? Kwani how old is Njeri?”
“She is in class one.”
My mouth dropped, “Oh my goodness that is so sweet.” I can’t believe I said that.
Smiling, Anne says, “I know. So she just comes to church and gives Susan to me, just like that so that she can go play with her friends.”
“Wow. But why you? I mean does she know you or something?”
“I don’t know. For real. But I enjoy holding that baby.” She says with a deep look in her eyes. It seemed she already had a connection with that child.
Down syndrome is a condition that is notable right from the time the baby exits the womb. It is characterised by delayed physical growth, characteristic facial features and probable intellectual disability. Surprisingly, it has no cure.
“So now about Susan, what shows she has Down syndrome?”
“Well, the facial features are notable and she is too tiny being a year and seven months old. She weighs five kilograms. By that age a child should already be on her feet and at least be able to utter some words.”
My hearts sank. That is like saying Susan looks like she was born last week. I felt for her parents, who already have the burden of eight children and now this one who needs special attention. Perhaps they didn’t think it was a big deal having as many children, until this one came with that condition. They must have had an idea of throwing the child away like many people in our modern world have done infinity times. But I hear the mother, being the true mother she is, refused to buy that. “Bado ni mtoto wangu.” I bet she said. That gave the man of the house a back-up idea, to disown the child.
“When she was born, the doctor told the mother that her baby was going to have slow growth. The mother didn’t know he meant Down syndrome, she has never even heard of Down syndrome. All she knew was that the baby is still hers.”
“So where did you come in now?”
“I just decided to help. I really love that child. It’s not easy for me to explain how it occurred to me that I could actually be of help. I just did it.”
“I hope I don’t cry.”
“You should cry. I went to my aunt and told her about Susan. She got touched too and offered to pay the bills when I take her to hospital. After a prior visit to Matter Hospital with my aunt, I later went with Susan and her mom.”
“Who carried who?”
Laughing, “Ai! Si I carried Susan while her mom carried her four month old.”
“Yes I wanted to hear you say you carried Susan. That’s a score for my readers you know.”
Weh tuendelee, hakuna time.”
“Oh yah by the way. I know it 6pm and you’re just from shagz.”
Ai you what’s your problem with my shagz? It’s just here in Naivasha.”
“Just here in Naivasha yet you took an entire day to come here.”
“Aki Vick si hivo.”
Pretending to be serious, “Basi ni aje kama si hivo?
“I was with my shosh. I had to help her with house chores then later I went with her to the shamba.”
I was at the brink of laughing, “I see you can make a good wife.”
She giggled while shaking her head. You bet she was speechless.
Anne, with all the charity she had within her, took baby Susan to hospital where she could get help from professionals. Not some other hospitals the mother went to sometime before that prescribed things that would worsen or rather not help better the child’s condition.
“The hospital is expensive though that day we were so lucky, imagine we didn’t pay as much as they said we would. So we went for consultation, later akachukuliwa picha ya roho, we saw a paediatrician who explained to the mom about the condition and a nutritionist who offered to get us supplements for free and advised on the kind of diet to give the child. When she grows bigger, we should take her for therapy where she will learn to walk and interact with kids with the same condition. It was just God.”
“And what is this picha ya roho?
“Ai si ni X-Ray!”
Laughing, “Who said X-Ray in Swahili is picha ya roho?”
Down syndrome may not be treatable but with a proper diet, the affected child can grow quite normally and do other things like other children. I was quite surprised when Anne told me that Susan is now fed six times a day mostly on proteins. Though the mother cannot really afford that, she tries her best from the petty daily jobs she does.
“What difference is there in Susan that wasn’t there before the hospital visit?”
“The last time I was with her, she could stand a bit unless fully supported by someone. She has become more jovial too.”
“And when will that day come when you will have a full satisfaction in seeing Susan?”
“When I see her going to school like other kids. I won’t stop until I see that come to pass.”
Anne’s parting shot was that people should know that Down syndrome is a condition like any other that if well managed, a child can grow and be like other children. It is only a death situation when negligence and a deceptive mentality is adopted at the expense of action and attention. Children with similar or different conditions can still be acceptable in the society.
 
Know anyone with a touching story? Or do you have one of yourself? Email me: victoralberts5@gmail.com

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