Special Needs Children
Having a child with special needs, or having special needs yourself is hard enough in a developed country like Australia. But for someone living with special needs in a developing country like Uganda takes the difficulty to a whole other level. Unfortunately in traditional cultures across the world having a child with special needs is viewed as a curse upon the family. Many marriages are broken up because of this often leaving a single parent to take care of a special needs child along with their other siblings. In horrific cases these children are simply abandoned at hospitals and orphanages. ChanCes has been privileged to encounter some extraordinary individuals with special needs that continue to inspire us, quite often on a daily basis. It is our pleasure to introduce some of these wonderful people… read on
Simon Peter Lutaya
Meet Peter. We met Peter about five years ago. Peter has a severe case of Cerebral Palsy with little control of his upper body, however the motor skills he has developed in his feet almost have to be seen to be believed. Peter can write, eat, draw and most incredibly sew using his feet alone. We were pinching ourselves in disbelief as he proudly displayed his skill set to us. Steve was so impressed he then commissioned Peter to sew messages on bookmarks to give to his scripture class. The next time Steve returned to collect the goods, Peter, very proud of his efforts and very hard at work had managed to make enough bookmarks to earn him a few hundred $USD.
When Steve asked Peter what he was going to do with his money, we were stunned. Peter, a boy who had not left his house in 10 years due to mobility requirements, wanted nothing for himself. He wanted to paint his mother’s house for her. We cannot mention Peter without mentioning his mother (Barbara) . Peter’s mother continually battles with her own illness. This has never deterred her from being the inspirational, caring and absolutely loving mother who has raised Peter and her other children to mirror these exact same qualities.
To date, Peter is one of our biggest inspirations. He is living proof that when things get tough, which we all know they do, there is never an excuse to not give of yourself to people who need it more. This smiley young man warms our hearts every time we go to visit Uganda, smart and loving, Peter is now teaching himself to type using his feet. As the saying goes you can’t spell ‘impossible’ without ‘possible’.
It would be remiss of us not to give special mention to Nora. Nora is Peter’s 21yr old cousin, who is a constant help to both Peter and Barbara. There has never been a time when we visit that Nora is not by their side. Thank you Nora, this family is blessed to have you.
Introducing Florence. As you may agree, when you first see Florence, her appearance is quite confronting – particularly to a Westerner. However seeing individuals like this is not uncommon in Uganda. Florence is an acid burn victim. When acid was thrown at her face in a crowded market place it essentially burnt off and melted her face and hair, and sent her blind.
We first met Florence in 2014 while she was begging on the streets in Downtown Kampala, we gave her the equivalent of $50USD in Ugandan shillings and were on our way. But the story doesn’t stop there. Jo could not get this woman out of her mind and was leaving Uganda the next day. So she asked our other trusted friend and driver, Wilson, if he would please find this woman and learn about her story. Wilson, clearly taken by this woman too did just that. We found out that she is a single mother of two boys, an 11 year old caring for her and an 8 year old living in the village with other family. She begs on the street as often as she can to raise what little income she can to feed herself and her children. Could life get any harder?
Enter ChanCes. We now have both of her boys enrolled in boarding school along with our original boys to expand their family. The school is not far from her home and we have employed a carer to cook and help Florence each day. The quality of life for her and her boys has drastically improved from a chance meeting on a street corner.
We have priced an operation to restore her nose, ears and lips, and it is our aim to see if we can reverse Florence’s fortunes by funding the operation. We have also learnt Florence may be able to have an operation that could restore her sight, but she has yet to see a specialist. Wilson has since taken a special interest in Florence. On one occasion when he was taking Florence to the doctors he was questioned about his involvement. Wilson replied saying “I am helping her for my friend” the doctor was also taken with Wilsons voluntary involvement and responded saying “please, I will help too”. Florence now receives free medical appointments thanks to the very generous Doctor. The international hospital in Kampala has quoted Florence’s facial reconstruction surgery as costing approximately $3000. For this once physically beautiful woman, the chance to look normal once more is a gift she could never imagine to come true.
Florence’s perseverance and resilience shown in difficult times is something each of us can learn from. Throw in the pressures of single motherhood, an income source reliant on begging, unnatural blindness and all the nasty side effects of experiencing trauma and this woman is nothing short of inspiring! She has raised two beautiful boys that are fiercely protective and fiercely loving of their mother. But, with the help of ChanCes they are able to enjoy their childhoods with significantly less stress and pressure and we are excited to watch them flourish. Florence, you have rewarded us by welcoming us into your life. With your loving nature and fierce determination we are thrilled to consider you and your boys, our lifelong friends.
Update from ChanCes…
If Florence’s story has touched your heart, like it has touched ours and you happen to have connections in the medical field who would be interested in assisting or advising. Or you simply want to contribute to Florence’s operation please contact us
Janepher or as we would say, Jennifer is another one of our special souls with Cerebral Palsy. When we first met this sweet little girl she was hunched over and rocking herself on a stool. The stench of urine was overwhelming and she was cooped up in a dark room with no windows, this mimicked her internal state – defeated.
As mentioned earlier children in this circumstance are often abandoned, as was this case with Janepher, but her paternal grandmother rallied to her side. For this humble family life has become a consistent, trying and depressing struggle. To say we were saddened by this situation merely trivialises the empathy expressed towards this little family. ChanCes has since sponsored Janepher into a special needs school and her development is something to be marvelled at. On our last visit to Janepher, no longer was this child defeated and lifeless, but has since transformed into a beautiful smiley little girl. She no longer hunched with defeat, nor tried to rock away her mental troubles, nor suck on her fingers due to anxiety.
This child now greets you with the most sincere and heart melting smile and sense of joy one can receive. Seeing Janepher at ease, content with her situation and herself has had an overflow effect. Her Grandmother has been able to lay many of her troubles to rest as she can see the physical and spiritual improvements in her peaceful grandchild. For children with extreme Cerebral Palsy like Janepher often the only way for them to communicate their general wellbeing is through their body language. From a hunched over child, rocking in a corner surrounded by her own filth, Janepher has transformed into an open and joyful child ready to be embraced by her visitors. Much like a metaphor for a caterpillar spending time in the cocoon before transforming into a beautiful carefree butterfly. We are excited to watch joy take a stronghold over this gentle little girl in the coming years.
A Ugandan friend living in Australia introduced the Ojambo family to us. They were not relatives or even family friends, just a family in the community struggling with a unique difference. Christopher & Christine’s first child Justine, was born with severe Cerebral Palsy and their second daughter Pauline, was born with an extraordinarily rare and painful nerve condition to her cheek. Thankfully their 3rd daughter, Nicole was born burden free.
Our initial reaction was how can we manage another family needing help, but we wanted to listen to their story. Justine is 8 years old and as she gets older it is becoming difficult for Christine to care for her at home with her disability and limited resources. Her father with an income of just $50AUS per week caring for two children with medical conditions has forced her Mother to find work out of necessity.
The second child Pauline is a gorgeous 6 year old who on paper has everything going for her. With steady grades of 80%-90% she is a very sweet natured girl with a humble demeanour and extraordinary resilience. Pauline has endured numerous operations through a charitable medical group, but now her condition needs particularly specialised help only found outside of Uganda.
In July 2015 we met the family and were taken with their clear adoration, respect and love for each other. You see in Uganda it is not unusual for people to reject you as being cursed and bewitched, even husbands will not accept their children with disabilities blaming the wife for such things. But Christopher was different. Not only does he work for a charitable organisation he also went from school to school and pleaded with Principals that Pauline’s condition was not contagious, it would not bring bad luck and was not a result of witchcraft. It’s clearly apparent where Pauline gets her resilience.
In a country riddled with infectious disease it’s not at all far fetched that lack of understanding and education on Pauline’s condition has translated into fear and rejection. Since being so touched and taken with their story we have sponsored Justine into Opening Doors a special needs school and had the great privilege of visiting in 2015. Our sadness was to see the lack of facilities, but the kindness and patience of the staff somehow compensated. Our hope is one day; maybe, the facilities at this school could be as wonderful as the staff towards these special children.
Pauline and Nicole are also receiving sponsorship into their primary school. Easing the burden of medical and education bills on Christopher and Christine has only solidified their family unit and returned some quality of life to the humble and dedicated parents.
Our hope is to see Pauline’s full quality of life and self-esteem returned with a sponsored operation in a developed country. Should you know (or know of) any medical professionals who may wish to assist in making this dream a reality, please contact us.
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