HOW would you cope if your baby was born with Down's Syndrome? Bolton Wanderers Football Club assistant communications manager Paul Holliday and his wife Nannette found out when baby Isabella was born two years ago. With World Down's Syndrome Day taking place this week, he tells his story.
THIS week will perpetually provide a happy coincidence for my family. Two years ago yesterday my second daughter, Isabella Grace, decided to forsake the purity of her mother's pregnancy to experience life on the outside - all 10 pounds and half-an-ounce of her.
March 21 is also World Down's Syndrome Day; a date selected to signify the triplication (trisomy) of the 21st chromosome.
Isabella has Down's syndrome but she also has blue eyes, the type of hair that her mother is continually striving to keep tidy and a burgeoning personality and spirit that can shatter a serious moment into shards of comical mayhem.
It was not until after last year's event that I had realised the significance of the date. March is a busy time for birthdays in our household: Nannette - my wife - celebrates her birthday on the sixth, Ella Rose on the 14th and seven days later it is the turn of Isabella.
Although my wallet may not agree, the paucity of time in between my impatient' daughters' birthdays will, I am certain, prevent many tantrums in the future.
As a parent of a child with Down's syndrome, I am constantly searching for and devouring information. It is helpful to hear of other families' experiences and relate them to our own. When I stumbled upon the Down's Syndrome International website, shortly after Isabella's first birthday, I afforded myself a wry smile when the connection dawned.
But smiles are what Isabella brings to us in abundance. From her pleasantly impish grin to the manner in which she walks; or rather, waddles. She can beam light to a darkened state and radiate warmth to a refrigerated mood.
As parents we cannot pretend that life will be straightforward for Isabella. It is wrong to judge her development alongside others, but comparison is frightfully impossible to avert.
She is walking ahead of schedule and has a vocabulary' of at least 30 signs. Whenever she learns a new sign (taken from Signalong - a simplified sign language course for people with language and speech difficulties) we regard it as a Eureka moment.
Predictably, one of her first, and which has since evolved into one of her favourite, signs is when she circularly strokes her chin with the index finger of her right hand. This lets us know that she is ready to sate her maternally-inherited desire for chocolate!
Public consciousness of Down's syndrome has increased over time thanks to the diligent efforts of the Down's Syndrome Association and many local groups, including the Lancashire Down's Syndrome Support Group, of which I am a committee member.
Raising awareness and understanding of the condition is just as important as raising funds for these charities.
Although the transition of time has positively changed attitudes and opinions about people with disabilities and learning difficulties, inconsistencies still exist and families like mine rely on these groups to raise awareness.
People with Down's syndrome do not suffer as a result of their condition.
It is not a disease, nor are they victims. They are not mentally handicapped, retarded or backward.
They are our children, siblings and friends. So if you see many people wearing green rather incongruently this week, don't think that they are being fashionably-naïve, they are simply lending their support to World Down's Syndrome Day.
Down's Syndrome Facts Down's syndrome is a genetic condition which affects about one in every 1,000 babies born in the UK.
Older mothers are known to be at slightly higher risk of having babies with Down's syndrome.
Physically, many babies will look slightly different to other children - for example, their eyes often slant upwards and outwards, and the back of the head may be unusually flat.
In addition, a large proportion will have some sort of congenital heart defect.
The child will have some level of learning disorder, although this can be very mild, simply slowing down the child's mental development rather than stopping it altogether.
Most children with Down's learn to walk, talk and read and write - as well as do many of the other things taken for granted with other children, such as ride a bike.
Babies and children with the syndrome often have an immune system which makes them prone to infections, particularly chest and sinus infections.
Babies with Down's can also have problems regulating their temperature, and can have very dry skin.
Useful contacts
- Lancashire Down's Syndrome Support Group's website is at www.dsa-lancashire.org.uk and can be emailed at Info@DSA-Lancashire.org.uk
- Down's Syndrome International's website is at www.down-syndrome-int.org, and the group can be contacted on 0845 230 0372 or emailed at enquiries@down-syndrome-int.org
- The Down's Syndrome Association website is at www.downs-syndrome.org.uk, and the charity can be contacted on 0845 230 0372 or emailed at info@downs-syndrome.org.uk
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