DS2009

In the catalogue to this show Carol Boys, the Chief Executive of the DSA
says:

“Surprisingly there are still a number of myths to be dispelled about Down’s syndrome and even now I am still asked the question: ‘Does Down’s syndrome exist in every race’?”

The answer is: it doesn’t matter what part of the world you live in, what religion
you are, what your culture dictates, or what race you are; having a child with Down’s syndrome is just pure chance.

There can be no way of predicting whether a person is more or less likely to make
an egg or sperm with 24 chromosomes, so we know that no one is to ‘blame’. Nothing done before or during pregnancy can ‘cause’ Down’s syndrome.

For every 1,000 babies born in the UK, one will have Down’s syndrome and there are about 600 babies with Down’s syndrome born in the UK each year. (This is even taking into account the fact that 95% of pregnant women who are tested and
told they are carrying a child with Down’s syndrome will terminate the pregnancy)
It is estimated that there are around 60,000 people with Down’s syndrome living in the UK.


I was going to get all deep and meaningful, when talking about these images, but really all I am trying to show is that anyone can have a child with Down’s syndrome.
Down’s syndrome affects people of all ages, races, religious and economic situations and in all countries throughout the world and all that really matters is how those people react and adapt to the change in their lives.

When our daughter Billie-Jo was born, I have to admit that I had no idea how we were ever going to live with her.

We suddenly had this child that was ‘different’ and definitely not what we had expected. Eight years on and we now have this wonderfully funny, clever and beautiful daughter, with an infectious laugh, a wealth of friends and an ability to charm people wherever she goes.


Now, I have no idea how I could ever live without her.




Meilyr Tomos

Meilyr Tomos is currently in the process of producing a fundraising CD. The CD will feature a variety of hymns and Welsh pop songs played by Meilyr on the piano.
Funds raised from the sale of the CD will go to the DSA and Christian aid.
Meilyr has had piano lessons from the age of 11 and is now 19.
A member of the Welsh Independent Congregational church, which is a circuit of 3 chapels in Carmarthenshire, Meilyr often plays the organ at his local chapel - Penygroes
As well as enjoying the piano Meilyr volunteers once a week at a wildlife centre and is an active member of the local young farmers
Meilyr is very proud of his Welsh heritage and speaks both Welsh and English, preferring and feeling more comfortable speaking in Welsh; his native tongue.
Having attended local mainstream schools, Meilyr will now be moving on to the Derwen Residential college for students with learning difficulties and disabilities based in Gobowen, which he is very much looking forward to.




Micah Samuel

Micah has a great sense of humour and is very sociable.  He has a strong sense of the correct way to do anything.  Of all our 3 children, he is the one who wants to make a blessing each time he washes his hands. (In Judaism, a “blessing” is a sentence acknowledging God’s grace for something we enjoy)  He knows lots of other blessings, too, and he says them in Hebrew at times of his choosing: not always the right times, but at 4 years old, who's complaining?

Micah remembers each week the rituals of the Sabbath (Saturday rest-day) and wants to take part in them; in fact, he looks forward to the Sabbath all week.  He will list out the memorable features of the Sabbath: white cloth on the table, grape juice with a special blessing, home-baked bread.  At four and a half years old, he can even tell you the recipe for the bread we bake each week.

Micah gets pleasure from being included in the ritual of Havdalah (pictured), the ceremony that marks the end of the Sabbath day.  As the youngest child, he gets the privilege of holding the candle.  For my own peace of mind, I hold it with him.
Havdalah is a ceremony, which includes all the senses.  We smell spices, to cheer ourselves up on saying goodbye to the Sabbath; we look at the flame of a candle which has several wicks, and we hold our hands up to see the play of shadow and light on our fingers; the leader recites the traditional verses over a drink such as wine, grape juice or even a cup of tea; blessings are said, and afterwards we sing songs.

Jewish rituals, probably in common with those of other faiths, can be enjoyed on different levels.  If you are a philosopher or a theologian, you can write books about the meaning behind the ritual.  If you are an artist, you can create artifacts to celebrate the ritual.  Whether or not you are capable of very complex thought, you can experience the senses and cadences of the ritual, and you can gain an existential pleasure from that and enjoy sharing the moment with other members of the family.

Micah is totally a member of the family, religious community and the wider community.  People seem drawn to him.  In some ways, walking to synagogue or traveling on the bus with Micah, his outgoing uninhibited exuberance brings us, his parents, into conversation with total strangers in a way that we would otherwise never have encountered.

As told by Leonora Samuel.




Bashir Khoda

Me and my son Bashir are muslim. We live in London. Bashir is 14 years old and has Mosaic Down Syndrome. He goes to Lister Community School. Bashir enjoys very much taking part in religious activities. We celebrate The Eid which is a festival that takes place at the end of the month of Ramadaan (fasting). In our religion we have to pray five times a day. Bashir like to join in very much. During the Eid celebration cultural dishes are prepared and the whole family join together. Families visit each other and children are given gifts. Everyone wear new dress and enjoy the day together.

Ally Khoda, Bashir’s father.




Jade Bhundia

My name is Jade Bhundia and I'm 23 years old.
My Mum Marion is English and my Dad Harish is Kenyan Indian. I have two brothers Fabian and Kelan and a sister Priya, I'm the oldest.
We have been brought up as Hindu's this means that I don't eat beef because cows are sacred animals, my Dad doesn't eat meat at all.
I also pray every morning with Dad; I do it after I have had a bath, as it's important to be clean and before I have had breakfast. We both sit in front of the temple and pray to Krishna who is the Supreme Being and Lakshmi who represents health and wealth, we light a Diva which is like a candle and give offerings of fruit or flowers whilst we pray.
I also do Yoga with Dad; he says Yoga is an important connection for a Hindu to his religion and historical heritage.
Hindu New Year is called Diwali, it is the festival of light, we celebrate this in autumn and let off lots of fireworks, which I love. On New Years Day we bow down to our elders to show respect and they give us money. Another special day for Hindu's is Raksha Bandhan Day, it is for blessing brothers.
I put a Rakhi, which is a thread bracelet on both my brothers, it is a reminder of our connection and represents my love and bond to them, as a gesture of their appreciation they give me money.
In the week I go to City and Islington College in Finsbury Park where I study Cooking, Health and Beauty, Yoga, Computers and Gardening. When I'm not at College I go Swimming, to an Art Class, a Music/Theatre Group and Horse Riding. As you can see I'm always on the go and never have a dull moment!  




Sophie Constable

Sophie Constable is 17 years old and has Down's syndrome and diabetes. Sophie is pretty, confident and passionate about life. She takes her responsibilities very seriously.
 
She is one of the senior altar servers at her church, The Holy Family, Welwyn Garden City. She carries the cross at the front of the procession as the priest and other servers come in to Mass. When there are younger servers she tells them what to do and when to do it. If there aren't many servers Sophie has been known to do all the jobs assisting the priest during Mass.
 
When Sophie's priest has been ill she has taken his role at the "Washing of Feet" on Maundy Thursday.
 
Part of Sophie's job includes clearing the altar and sanctuary at the end of Mass and putting the altar vessels and collection away in the safe. She does the tidying up as swiftly as possible as she dashes off straight after Mass to play football with Harvester's inclusive football team in a neighboring town.
 
Football is massively important to Sophie. She flew out to Moscow last month to watch her beloved Manchester United play in the Final of the Champions League. She had the date in her diary since October, always confident that United would be there and that she would get a ticket because "we are the best team, and I am in MUDSA (Manchester United Disabled Supporters' Association)". Through MUDSA Sophie has met all the Man Utd players AND her great hero Sir Alex Ferguson.
 




Aliya Ward Williams

Aliya's mum, Julie, was born in East London but grew up in Essex. She moved to Manchester to study when she was 18 and has spent most of her adult life as an honorary Mancunian.

Aliya's dad, Wayne, is of Jamaican descent. His parents came to England in the 1960s and lived in Manchester until the 1980s, when they returned to live in Jamaica. Wayne has 3 brothers and 3 sisters. Wayne was brought up in a traditional Jamaican household and when amongst his family will speak Jamaican patois. Hopefully, Aliya will be bilingual.

Aliya should have been born a Leo but came out of her mum's tummy 16 days later than expected and is now a Virgo - which is a great relief for her Scorpio mum. Aliya was born by caesarean section and sadly the first few hours of her life were probably the worst time of our lives. But what a difference 21 months has made. Aliya is an absolute joy and brings great pleasure to all that know her - except her 7 year old sister, Yasmin, whose hair Aliya loves to pull. Even though the doctors told us all the problems associated with Down’s syndrome they forgot to tell Aliya! She has been living life to the full and enjoying (nearly) every minute. She could weight bear at 3 months, sit unaided at 6 months and is already beginning to walk.

Who knows if we are here for a reason, but if we are then Aliya's job is to make people feel good about themselves. She manages to smile and wave at people in such a way that they can't resist feeling good. Even people who aren't comfortable around babies seem at ease with her and I think that is a real gift. So she won't be a rocket scientist but she brings joy to those around
her. I think that's quite a contribution to make to society.

Through having Aliya I have met a whole new bunch of people that I would never
have known and it's shown me a compassion and an understanding of disability
that was lacking before. I am fiercely proud of both my daughters and they
both deserve their place in the world.

As told by Aliya’s mum, Julie.




Shaan Notay

Minda, Jas, Makhan and Shaan Notay:  

We are a modern Sikh family living and born in Britain.
Our two boys are our world!  They are two fantastic boys, both with their own diverse and energizing personalities. 
Our oldest son Makhan is 8 years old and our youngest son Shaan is 4 years old.  Makhan is a strong traditional Sikh name representing the meaning of strength whilst Shaan means someone famous and yet peaceful. Both are intelligent boys who should never be underestimated and will find that anything in life is possible, if you just believe!

As told by Shaan’s mum, Jas.



Laura Jagne

Laura is 12 going on 30; she likes to mother her siblings and cousins.
Alex is Laura’s twin and there are just 2mins between them.  There is only eighteen months between Alex and Laura and Megan and Christian, who are also twins and have 10mins between them. (Laura’s mother had four children under the age of 19 months.)
Laura likes to organise things, but they have to be done her way, for example when I have tidied up and put away books and toys, she will take them all and re-arrange them in different places. For many years she insisted that she was called Batman, and would insist on wearing a cape everywhere she went.  Laura is also ‘part squirrel’ and will hide objects; she has an "office" under her bed that is an Aladdin’s cave.  We are on the whole a very close family; Laura has a very strong bond with her brothers and sister, although sometimes you would easily dispute this. Laura is a very confident and talkative teenager, she loves to entertain, and tell a yarn to who ever will listen.  Laura has always done everything that the others have, sometimes she has been sent first, if the others want to see if it is too scary or too dangerous for them. We have traveled worldwide as well, which when I look back it was quite a feat.
 
The children’s father is Gambian and now lives abroad. He has had very little to do with the children, he finds Laura very difficult to understand, and some of his family think Laura will ‘get better soon’. Overall Laura is a lively confident and bright individual who finds life a little unfair but will always have friends around her.

As told by Laura’s mother Janet.
L to R:
Christian, Alex,, Megan, Laura




Theo Avraam

Theo was baptised into his father, Michael’s Greek Orthodox faith in Larnaca, Cyprus in September 2007.  His parents, Helen and Michael had been married in the same church, by the same priest, in May 2004.  Theo took the baptised name of Theophilos , which translates as ‘divinely loved’ or ‘friend of God’. According to Greek tradition Theo will celebrate his ‘name day’ or ‘Saint’s Day’, as well as his birthday, every year, with St Theophilos day falling on February 4th.  Theo’s paternal grandparents and extended family all live on the beautiful island of Cyprus. 
Theo’s parents are keen for Theo to grow up knowing of his father’s Cypriot roots and traditions. 
Musically minded Michael plays the Greek bouzouki and Theo loves nothing better than to listen to his Dad play along to Greek music.  As Michael is fluent in Greek, we hope that Theo will learn a few words in order to be able to converse with his young cousins in Cyprus.  The family have recently joined the congregation of the Greek Orthodox Church of Saint Barbara the Great Martyr, Chester, a small but very friendly mix of Greek, Romanian, Russian and English Orthodox Christians led by Priest Pancratios Sanders, who has welcomed them all with real warmth and kindness.