DAY 23: THE CHILDREN WHO ARE “OLDER” THAN THEIR PARENTS.

adalia header

While surfing the web one day like that, I stumbled on a video of a little girl called Adalia Rose.  What caught my attention was Adalia’s physical appearance. Initially, I wasn’t quite sure whether what I was looking at was human or extra-terrestrial.    I found it cute though watching several videos of this peculiar looking child having fun, dancing, singing and excitedly chatting away. I still couldn’t figure out what could have been responsible for her odd look. I was quite confused really. In addition to her unique facies and aged appearance, she has a large bald head, a tiny body, and a very nasal voice.  I couldn’t possibly imagine what was responsible for all these.  As they say Google is your friend so I put it to use and found some interesting things. It turns out Adalia was born with a very rare disease, called Hutchinson-Gilford progeria syndrome (progeria for short). Even with her disease, Adalia is such a beautiful, sweet child. I think she’s pretty sharp for her age too. A victim of constant cyber-bullying,  Adalia has continued to enjoy her life and raise awareness about her condition. She’s quite the little starlet too, just check out her Videos on YouTube.

Asides Adalia, Hayley Okines is another famous child living with HGP syndrome. She has co-written and published her autobiography  titled “Old Before My Time ” in addition to raising  funds for research and awareness about her condition.

She alongside Sam Berns have lived past the usual life expectancy for children with thier condtion, which is 13 years.  At age 14, Hayley had the body of a 105 year old woman and is among 89 children in 32 countries living with progeria. These children are true gladiators! i trully respect them.

Hayley Okines

Hayley Okines

Progeria is one of several progeroid syndromes. The word progeria comes from the Greek words “pro”, meaning “before” or “premature”, and “gēras”, meaning “old age”. The disorder has a very low incident rate, occurring in an estimated 1 per 8 million live births. Those born with progeria typically live to their mid teens to early twenties. It is a genetic condition that occurs as a new mutation, and is rarely inherited. Although the term progeria applies strictly speaking to all diseases characterized by premature aging symptoms, and is often used as such, it is often applied specifically in reference to Hutchinson-Gilford Progeria Syndrome (HGPS). (Source : Wikipedia)

No treatments have been proven effective. Most treatment focuses on reducing complications (such as cardiovascular disease) with heart bypass surgery or low-dose aspirin. Children may also benefit from a high-energy diet.  As there is no known cure, few people with progeria exceed 13 years of age. At least 90% of patients die from complications of atherosclerosis, such as heart attack or stroke. (Source : Wikipedia)

Mental development is not adversely affected; in fact, intelligence tends to be above average.  They age at a rate eight to ten times faster than normal. They show no neurodegeneration or cancer predisposition. They also do not develop the so-called “wear and tear” conditions commonly associated with aging, such as cataracts (caused by UV exposure) and osteoarthritis (caused by mechanical wear).  Although there may not be any successful treatments for progeria itself, there are treatments for the problems it causes, such as arthritic, respiratory, and cardiovascular problems.(Source : Wikipedia)

Click here for more info on Progeria.

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DAY 22: ASMAU

night fire

 For the first time, Asmau saw the beauty in fire.  Seated on a stool, alone in the backyard, bent over the fire; she watched transfixed as the orange flames devoured the rags she had dropped in its belly. She picked another rag from the small heap of rags  beside her and fed it to the fire. She watched as the flames leapt up and burned brighter, blackening the rag and quickly turning it into ashes, a few escaping into the night carried away forever by the night breeze .  She liked the way the light of fire clashed with the dark of the night.

The fire cast an eerie glow on Asmau’s gaunt face.  The sound of shuffling feet approaching turned the mild fascination on her face to a frown.  She had expected all her neighbours to be asleep except for the mothers who had to wake up occasionally to attend to their crying babies. One of the tenants, Iya kike, appeared at the corner of the backyard. She stopped as soon as she saw Asmau. Her gaze moved from Asmau to the little fire burning at Asmau’s feet and back to Asmau again. Iya kike opened her mouth to speak but immediately closed it and went into one of the bathroom stalls shared by all the tenants in the compound. She came out some moments after, turned to leave but not before casting a puzzled glance at Asmau. Asmau acted like she wasn’t aware of the anyone’s presence.  Iya Kike adjusted the wrapper over her ample, saggy bosom, made a loud “hmmmph!” sound before shuffling away armed with fresh fodder for tomorrow’s gossip.  Asmau wondered what name they would add to list of names they already called her.

She didn’t care anymore; she had stopped caring a long time ago. She didn’t blame them, it really wasn’t their fault.  It was only natural for them to avoid her and say unpleasant things about her.  But was it her fault too? Was it her fault that until two weeks ago she had always carried the pungent of urine around with her?  Was it her fault that no matter how hard she tried, urine never stopped dribbling between her legs?

They took the child that she had brought to the world after almost two days of excruciating labour away from her.  They said they didn’t want her to transfer her smell to the child. They gave him to another wife to nurse and locked her up in a small room. The doctor had told her that her pelvis had been too small for baby’s head to pass through so she had had an obstructed labour.  But was that her fault too?

Her father had married her off at 15, immediately she finished form two.  She had gotten pregnant at 16 and was happy and terrified at the way her tummy swelled and swelled with the promise of life, only for her body to betray her in the end. She was sent away from her husband’s house with only a few of her belongings.  Her parents refused to accept her because she had brought disgrace on their heads, she was a taboo. For the past 12 years, her body had betrayed her. Daily begging paid for food and a shabby accommodation in another part of town.  For the 12 years, people had covered their noses when she huddled past. She talked to no one. No one talked to her much. She knew they all wondered what was wrong with her, why she stank all the time. They weren’t curious because they wanted to understand or help her; they were simply just curious. She tried to do them a favour by ridding them of the taboo that was her, but she never able to go through with it.

Her nylon bags and rags took away some of her shame. They didn’t work as effectively as the urine bags and sanitary pads which she couldn’t always afford but at least they made sure her clothes and beddings weren’t wet from urine all the time. She had folded them, wore them, changed them and washed them and used them again and again. Now, there wouldn’t be need for them anymore, because a kind group of people had found her and took her to the hospital and made sure that she got the appropriate treatment. She didn’t believe it would work; she had waited for two weeks to be sure, so far, she wasn’t leaking again.

She squeezed the rag in her hand, it was the last one. She had decided not to burn them all at once. She wanted to say goodbye to them one by one. She held it up to her nose and inhaled, the faint familiar smell of urine brought a sad smile to her face. Her shame was gone, finally. She dropped the last rag into fire and watched as the fire reduced to a smoulder.

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Vesicovaginal fistula (VVF) is an abnormal connection/hole between the vagina and the bladder resulting in leakage of urine into the bladder. This causes urine to leak uncontrollably from the vagina.

According to statistics, Nigeria has the highest prevalence of VVF in the world (400,000- 800,000 cases). About 95% of these cases occur in Northern Nigeria.  55 women are infected and 18,000 cases are untreated daily.  The most common cause is prolonged obstructed labour.  Other causes include advanced cervical cancer, Gishiri cut, caeserean section, and uterine rupture.

 VVF is a common picture in Northern Nigeria because of the high prevalence of child bride and also because of unskilled birth attendance .  Asides from the problem of struggling with issues of hygiene and other complications of VVF,  many patients suffer from stigmatization  and great psychological trauma

The good news is that VVF can be surgically repaired with very good outcomes. Because most women with VVF can’t afford surgery, foundations have been set-up to assist with financial aid. Individuals have also helped in providing assistance. Most recently, Nigerian actress, Stephanie Linus, partnered with the Extended Hands foundation at the General Hospital, Ogoja to help 22 women with VVF. 

Stephanie-Linus-in-Cross-River-BellaNaija-December-2013-01

To find out more about VVF, check out the following links:

http://en.wikipedia.org/wiki/Vesicovaginal_fistula

http://www.rcog.org.uk/book/their-own-words-12-stories-vesicovaginal-fistulae

http://www.rooseveltcampusnetwork.org/blog/life-social-outcast-story-vesico-vaginal-fistula-girls

http://allafrica.com/stories/201306171128.html

GOOGLE IS YOUR FRIEND! 🙂