Having been inspired some years back by the story of Hailey, a young girl who suffers from Progeria, I was very happy to see a documentary recently updating the public on her battle to live.
Having already over come so many trails and obstacles, Hailey has grown into a very mature pre teen with a wonderful family net work and friends supporting her, standing up for her and doing their best to help her to live a full life.
Hailey is an inspiration to me.
When I even think of her, I cry. But never out of sympathy for her. Far from that, I cry with humility at her great strength of character, her beautiful smile, her maturity and trust in her family.
The documentary took us through some medical trials that hopefully will pro long her life. It took us through her journey starting secondary school and the adjustments she needed to make now she was an even bigger girl. It was so brilliant to see.
I am writing this article to bring awareness not on her but on the disease.
There are many unique genetic disorders out there that are so rare, they are unheard of by the vast majority.
Another illness I wanted to mention is NOME disease.
I did not know about it until very recently through another documentary.
A group of doctors and surgeons travel every year to Ethiopia to treat children with facial disfigurements so serious that most would never be able to eat, talk, function or in worst case scenarios, be accepted in their communities.
Nome disease from the studies carried out so far, had recognised that malnutrition babies were being infected by some flesh-eating disorder affecting their faces. And I mean, the flesh and bones were being eaten away leaving huge holes where their jaws, teeth and eyes should be.
Some children, would need several operations just to rebuild their faces a procedure that is life threatening for some,very complicated but life changing for those who managed to get it done.
The doctors who flew out there, did all the operations for free, traveled with as much equipment as they could carry, and relied on donations to be able to carry out their work. They had only a few weeks out there to try to see as many patients as possible, make the heartbreaking decisions as to who they could treat and do as good a job as possible with the lack of decent facilities available to them.
I have yet to find the link for the organisations raising awareness for this cause but once I do, I will post it up. Please donate.
Hello peoples!!!
Man oh man, things are still not going too well. I still have not been able to replace my computer since it got blown up and I am now hogging my friends computer for the next few days to give you all a basic catch up on the saga of madandloud.
To begin with, I’ve got world cup fever! I never liked watching football before but the hubster and my countrie’s team have got me on tenter hooks for this world cup.
We have managed to get through to the quarter finals as the only African nation left in the competition but all hope is not yet lost!
I’ve been waving my flag, got my friends supporting us as honorary Africans and I have watched almost every match so far regardless of who is playing.
I have to say, I’ve really enjoyed the highs and lows, the last match had my heart going in the hope that “we” got through to the next round (and we did it!).
I could go on and on like I’m some sports expert (but I’m not lol) but we’ll see if we can beat the other teams to get through to the next rounds.
Go team!
Next on the agenda, I went for some entry exams to start a new course and I passed!
So chuffed with myself and very excited. Come this September, I’ll be a student again which is a bit on the scary side but, the motivation has not waned.
Also on the agenda in the next few weeks is a school assembly at my kiddo’s school to do a small talk on being a Muslim woman.
After having had a confrontation with some young students a while back, I dragged them (not physically!) into the head mistress’s office to make it clear that they were not allowed to abuse me nor would I tolerate such behaviour from them.
The head decided to use the incident as a focus point to interview me for the up coming assembly to bring more awareness to the students about Muslim women’s clothing policy (to put it nicely) and to give me a chance to clear some of the misconceptions that some students have in regards to the “image” of Islam, why women wear what we wear and a few other topics.
Since that initial meeting, the head and I have put together some slides, done a survey of what questions the students would like answered etc and God willing (Insha Allah), we are going to do an interview style assembly so I can answer some of them.
Looking forward to that a lot!
Kiddo can’t wait as it’s a source of pride for her to have Mum come to school and show her friends how nice I am lol. Hope I do her justice.
Hayfever has hit kiddo badly so, I’ve used it as an excuse to be away from a lot of things recently including hunting down a new hard drive, blogging, socialising etc.
Oh, so many little things has been going on, it’s amazing how much we all fit into short time spans.
But give me a few hours or so, I’m going to write about a programe that I saw recently that has moved me (well actually it’s two different programs but I will combine them into one article).
See you soon.
Peace out.
Just a quick notice.
Unfortunately, lil Miss Kiddo has blown my computerby stticking a needle into the hard drive a few days back so I am having to borrow a friend’s lap top to send a quick message.
I will not be doing any posts until I get a replacement computer (c/o Mr Hubster) so forgive me.
Hopefully, I will be back before the end of the week, but since it’s school holidays, I am planning to take advantage and just chill. I mean literally chill, no major house work, no shopping, no cooking (if only!) and defo no running around after Miss Kiddo.
Ahhhh, feeling the lie-ins, the laziness settling in, the mayhem………..
See you soon!
Peace
