November 30, 2011

On November 26, 2011 I boarded a flight from Madrid to New York and grabbed a copy of the Daily Mail as I entered the plane. I settled in my seat, flipped open the pages and saw a story written by Frances Hardy for the Daily Mail. As I read through the pages, the face of a little angel captivated my attention and for once, I thought I must digress from my world of politics, foreign relations, and law to write on this precious little magnet.

Taya Kennedy was born in September 2010. Mother is Gemma and her partner of three years Robbie, is Taya’s father. Both parents had not planned the pregnancy however, when it came they accepted it with joy and made preparations for the birth of Taya. Robbie, 23, works in the banking industry and mother Gemma 29, is a mortgage adviser with Santander. She owns two homes one of which is a detached home they live in Bradford.

During pregnancy, Gemma decided not to have any prenatal tests to determine whether her baby had Down’s syndrome. She is well aware that such tests had implications as they could increase the risk of miscarriage and the loss of a child. Moreover, both parents had decided to love and cherish whatever child came their way. Gemma was careful not to drink any alcohol, smoke or stay in any environment that may complicate the health of her unborn child. In fact, Gemma took all required nutritional supplements to make sure she gave birth to a healthy baby.

Taya was born at 5lb 30z, a baby girl with “beautiful oval eyes”. Gemma thought her eyes “look oriental” and when Robbie cut the umbilical cord, both parents cried with joy and none had any idea something was wrong. Ten minutes after the birth of Taya, their joy turned to fear and anxiety when the doctor revealed “I think she has Down’s syndrome” and then the doctor left.

On revelation of their child’s condition, they were surprised and wondered why such had happened to them. They were both taken by grief as they lack preparation for such a devastating news, they felt “numb and grief-stricken.” As days pass by, they learnt about the extent of Taya’s disabilities and soon realized the real deal.

Down’s syndrome is known as a chromosomal condition characterized by presence of an extra copy of a genetic material on the 21st chromosome. The side effects and gravity of the extra copy vary greatly among people, which in most cases depend on genetic history, and pure chance. The incidence of Down’s syndrome is very unlikely but estimated at 1 per 733 births. Down’s syndrome is associated with some impairment of cognitive ability, involving from mid to moderate disabilities. Children with Down’s syndrome have average IQ of around 50 compared to normal children with an IQ of 100.

Kids with Down’s syndrome are known to have the following characteristics: an abnormally small chin, an unusually small face, oversized tongue, shorter limbs, poor muscle tone, and a larger than normal space between the big and second toes. Also, the health condition of children with Down’s syndrome, include a higher risk for congenital heart defects, recurrent ear infections and obstructive thyroid dysfunction and obesity.

According to Gemma, “Taya was more floppy than a rag doll. It was as if she had no bones.” Taya had a single crease in her palm, a gap between her toes and a “flat nose that signals sinus problems. Taya also has deficiencies in her sight and hearing including her bowels and heart. Tests revealed her heart had two holes in it but Gemma and Robbie were told not to worry, that Taya would be fine.

After learning of her daughter’s conditions, Gemma became resolute and decided she had to fight for Taya. “People can be really negative about children with Down’s” she stated. They say they can’t do this and won’t be able to achieve that. Gemma indicated how someone said to her “I suppose she’ll never be able to live an independent life,” and I said, “why on earth not?” Gemma would not budge or give up on her child so, when people say “poor you” she finds it “offensive and irritating.” To Gemma, Taya is her special child from God.

Gemma refuses to accept the misconceptions and preconceived notions and believes that Taya is able to achieve any dream irrespective of how high. She was told Taya would not develop all her teeth but already she has seven baby teeth. She was told Taya would be slow to speak, but she already says “Dad, mum, nana, cat and ta.” She has refused to listen to negativity or give up on her child. She is resolute Taya will have as many chances in life as any other child. Gemma has decided to prove to Taya that any aspiration is achievable irrespective of her Down’s syndrome. Her goal is to make Taya an inspiration to others.

One may wonder why Gemma is so inspired and optimistic about her only child. The fact is that Taya has been able to overcome all odds. Taya has been able to prove many of the experts wrong about her life and future. Gemma was told children with Down’s syndrome are not expected to walk until they are three to five years old, but, Taya is already standing. She is strong and her physiotherapy has indicated she will be walking by Christmas. Her muscle tone is excellent and just like a normal child’s.

Gemma also does activities with Taya to keep her strong and healthy. She plays game with her to develop her muscles, she does exercises with her to keep her fit and she makes her stand to keep her legs firm. Gemma and Robbie never believed in the limitations created by Taya’s condition. Rather they boosted her strengths and ability.

Gemma received support from her mother Diane,58, a social worker and a specialist in disabled children. Through her help, Gemma discovered Taya responds well to visual stimulation. Taya has an expressive beautiful face but sometimes, people say, “Don’t you wish she was a normal child?” But Gemma knew without Taya’s disability she wouldn’t be Taya so, she is unwilling to accept misconceptions or change anything about her child.

It was Eletta 30, Gemma’s cousin who advised that Gemma look at the Urban Angels’ website. She is encouraged by the company’s ethnically-diverse models and its “philosophy of inclusion.” The Urban Angels serves clients and great brands like: Burberry, Stella McCartney, the GAP, H&M, ASDA and the like. Gemma took some photos of Taya on her I-Phone and decided to send them. There was an application to fill too and no one asked Gemma if Taya is disabled so Gemma decided not to mention it.

Then Gemma got the phone call that every proud mother would pray for. A woman from the Urban Angels said: “We loved your pictures. Could you come to Manchester with your daughter for a photo shoot?” Of course Gemma said yes and when Diane told her to indicate to the agency that Taya has Down’s syndrome, Gemma decided not to but why? Because as a loving mom who believes in her child, she does not want Taya chosen as “the token disabled child.” If Taya was going to be selected, it must come down to her merit.

Taya loved the camera and her “chuckling with glee” captivated those who see her. She is ‘photogenic, warm and smiley child and that shines through in her photographs’ according to Alysia Lewis, owner of Urban Angels the popular UK model agency that signed Taya up. Taya is one of 50 children chosen from 2,000 applicants to model for big brands and that she has Down’s syndrome played no role in her selection. Taya got picked not because of luck but because of her ability, she is calm and able to stand in front of the camera, which many kids find difficult to do. She was what the modeling agency was looking for and now, many big names are queuing to sign Taya. She was able to beat all odds and prove the pessimists wrong.

The story of Taya and her parents is inspirational. It is a story of love, resilience and human determination to overcome all misconceptions. It teaches not to reach a conclusion on human ability based on disability. Taya is an amazing child who has shown that nothing is impossible.

Dr. Adeyemi Oshunrinade [E. JD] is a writer and published author; an expert in general law, foreign relations and the United Nations. He is the author of ‘Murder of Diplomacy’ (2010),  ‘Wills Law and Contests’ (2011) and many more. Follow on Twitter @san0670


Categories: Down's Syndrome

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