Small steps that were a giant leap for UAE genetic disorder(news report)

Roberta Pennington
May 20, 2014- The national’s newspaper
Abstract:
When most people pop in their head or think of a word “disability” they instantly picture someone on a wheelchair or handicapped but that’s not the reason, we need to study their case and embrace them with care and support. Individuals with disabilities are the most noticeable and significant groups in the UAE that should be treated equally. In the UAE they provide facilities for people with disabilities, educational needs, training centres and therapies. In my news report, I will talk about an Egyptian girl born with a genetic disorder, possible causes of genetic disorder, how she has adapted her behaviour at school and home, connection of the genetic disorder to UAE federal law along with views about her case.
Kenzy’s case:
Dubai- Speaking about Kenzy Said El Fakarany, the only daughter in the family who is born with a genetic disorder at the age of four that was three years ago, at that time she took a temporary steps and it was one of the greatest moments that her parents felt happy about her. Kenzy’s father, uttered” I keep thinking children have to walk, and to walk they have to stand first”. Kenzy’s father believes, every child has the ability to strengthen their muscles to be in a good shape even if they have this kind of disability.
Kenzy having many characteristic that the school first stage coordinator and teachers acclaims her. She is so high spirited, persistent, very determined to do things independently, and having strong potential. Although she has a genetic disorder, she got a lot of dreams and hopes to carry on with her life. Even though, she did several operations in her young life, with another one planned for June. Her only dream is to be a doctor, as she stated” I’d like to be a doctor, if somebody is sick, I want to make them to be fine”.
Kenzy has adapted her behaviour at home by standing next to a miscellaneous piece of furniture and walls. For example, her father instructed her to rise next to household furniture and walls in order to practice working on strengthening her muscles. Unfortunately, some of her muscles are not fully developed because of the genetic disorder that she is struggling. Also, Kenzy’s father let her stand up for many hours, one hour and a half. The doctor said to Kenzy’s father “when the time will be five minutes, she will be able to walk so, I’m trying and trying” Mrs. Said never failed on attempting to let his daughter stand on her legs over and over. One day, Kenzy was standing close to a wall and stood on her own for just over four minutes. Abruptly, she walked and Kenzy’s father found her coming toward him. Of course, with the help of the doctors and family encouraging her to try and never give up.
Kenzy has no control on the basic milestone in terms of movement, hands and finger skills at school. For example, when the instructor asking question she is amid the first to raise her elbows with her helper. This shows that she have a high intellectual skill at school, during class; She joins her classmate at a table for four and grabs a pencil to print her name on the construction paper. Also, it is used to cut the outline of an air balloon using scissors with special handles that snap open called “long loop Easi grip scissors”.
Kenzy enrolled at Deira private school at the age of seven focusing at special students physically more than mentally. Kenzy entered foundation stage two this year that she made her parents and school community astonished. The reason is that private schools supporting children mentally more than physically, when they see her case they refused her straight away, they think she is physically awkward and can’t be enrolled at this school. To this point, Kenzy’s father disagrees with the school choice of Kenzy’s physical movement. He argues that even though she is mentally okay she can be physically okay too. Kenzy’s teacher, Kerri-Ann Jeffery and the first stage coordinator, Clemy Fernades stated” their special student had inspired Kenzy’s school community by not allowing herself to be limited by her physical challenges” Children are not accepted in schools attributable to provide supplies and available services inside school. The reason of that, there will be inadequate transportation, elevators for entry for extra floors, lavatories that are suitable for someone with a physical disability, and proper desks. Besides, lack of specialized staff to guarantee the safety and well-being of the child.
Description of the genetic disorder of Kenzy:
A genetic disorder is a disease that is caused by malformation of human being’s DNA. Malformation possibly can be tiny as single-base in just one gene, or they can include the addition or subtraction of the whole chromosomes. In the following paragraph I will mention about Kenny’s genetic disorder (Ehlers Danlos syndrome), symptoms, possible causes, connection of genetic disorder to UAE federal law of Kenzy’s genetic disorder.
Since Kenzy was a new-born she got a genetic disorder with a locked and twisted knees and elbows. This severe condition of a genetic disorder called “Ehlers Danlos syndrome”. Ehlers Danlos syndromes are a group of hereditary disorders which shared common types containing joint hypermobility (loose joints) and weakness of the tissue. The symptoms of Ehlers Danlos syndrome of Kenzy are thin lips, protruding eyes, saddle nose, frontal bossing, not developed teeth, swollen knees, small chin and thin skin. The possible causes of Ehlers Danlos syndrome of Kenzy are deficiency of vitamin C and genetic.

Relationship between genetic disorder and UAE federal law 29/2008:
UAE federal law offer individuals with special needs educational and health services were they can be able to build their cognitive and physical skills. Before the federal law Kenzy was depressed and felt lonely because she needs friends to be with her, enjoy the moment and after the UAE Federal law they provided her facilities like enrolling at private school to be social and ambitious. Besides, UAE Federal law contributes great health service for people with disabilities including surgeries that offer equipment and materials.
Views of Kenzy's case:
The first statement about Kenzy’s father said “so if she wants to stand, she has to strengthen her muscles” I believe with the help of Kenzy’s father exercising her twisted knees by doing a physical therapy at home. It is a good step as he knows the key to cure his daughter is to stand up so she strengthens her muscles and little by little she can walk. The second statement about Kenzy said “when I grow I want to work in medicine, if somebody is sick, I want to make them to be fine”. Kenzy is a caring, selfless that she think of sick people first and forget about her case completely. She is willing to be a doctor in the future and work in medicine so if any patients are sick with her touch they will be in a good condition.
Conclusion:
The story of Kenzy born with a twisted knees and elbow faced many challenges in life, her hopes and dreams carry on with her life, her parents and doctors encouraging her and let her stand with her feet. She has not stopped surprising her parents and her school community, everyone say she is special because is mentally okay but physically not ok. As far as I’m concerned, doing a surgery to repair the damaged joints and eliminates the tumour on her knees will help her move. Even she will be able to move she must exercise daily in order to strengthen her muscles.
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