The Colour Purple

You would think that after the food colouring fiasco of Ivy's Portal to Another Dimension Cake that  I would steer well clear of trying to mix colours to create new shades. Yet last night, there I was again, trying to achieve a perfect purple, drop by blue and red drop. Once again, I only succeeded in making a dirty mess. That is definitely the last attempt.

So why, so soon after my last failure, was I keen to subject myself to the probability of further disaster?

The answer is we were having a bit of a "Purple Party" and Purple Parties need Purple Cakes.

To find out the answer to the question Why a Purple Party? I have to go back to the time of my rather unpleasant divorce from husband number one.

Husband number one had a sister. If she were to blog, she would have many stories to tell about the people in her life who have let her down. Maybe I would be one of them. I allowed our relationship to become a casualty of the divorce and lost contact with her and her family.

When eventually we did re-establish contact, it transpired that she had had a child with her second husband, a likeable Liverpudlian some years her senior. Problems had developed with the baby - a son. He was diagnosed with West Syndrome.

My emotions were somewhat mixed. I had a nephew I'd never met and his little life had been far from easy and straight forward. I had never heard of West Syndrome so I did the first thing I always do these days when faced with a need for knowledge - I googled it.

The Great Ormond Street Hospital NHS Trust website had this to say about West Syndrome, the incidence of which is approximately 1 in every 5000 births.

Usually around the age of six months, the baby will develop infantile spasms. These are a type of epilepsy consisting of a very rapid jerk with bending forward of the head, arms and legs; because of the bowing motion they are sometimes described as ‘salaam’ attacks. The spasms often come in ‘runs’ with a few seconds between each spasm and can be mistaken for colic, initially. The baby may become generally irritable and unsettled and may stop developing, or even lose skills. From the age of one to two years, if not before, the infantile spasms will probably stop but other forms of epileptic seizures may well occur.

Sadly, the infant is very likely to have developmental delay and sometimes significant long-term learning problems. Spasms and other forms of seizures can be distressing and, if they are occurring very frequently, interfere with the time he or she could be learning new skills. They do not, however, cause brain damage. Learning disability is caused by the severity of the underlying disorder that is also causing the seizures. In general, those infants whose seizures prove hard to control will probably also have a learning disability. Unfortunately even if the spasms are controlled the child may still have learning difficulties.

[http://www.gosh.nhs.uk/gosh_families/information_sheets/wests_syndrome/wests_syndrome_families.html]

I made the journey up North to visit the family and meet the little lad in January 2009 when my baby daughter was 9 months old. As my daughter progressed rapidly through the landmark developmental stages, I couldn't fail to notice how my nephew was being left behind. I am making the same comparisons now with my little boy.

My nephew is gorgeous but his life is not going to be the sort of life you imagine for your child. His future is uncertain and the effects of the cocktail of drugs administered in an attempt to control the seizures is also unknown.

My nephew (bottom right) at my wedding February 2010

My contact with my sister in law now is mostly through the medium of Facebook. I share her joy when an unexpected triumph is achieved (recently he managed to feed himself a marmite sandwich) and I feel her pain and frustration when things go wrong (injuries, illness, bad reactions to meds, lack of support, prejudice or just the realisation that this is how it's going to be).

There is little that can be done about most of the causes of the frustration and pain but prejudice is something that can be tackled through the raising of awareness.

March the 26th is Purple Day. Kirsty at Gone Bananas explains it more eloquently than I would. She is running a Passionate Purple Day Giveaway to raise awareness of epilepsy and show her own daughter, Meg (a sufferer), that there is love and support out there.

So for Meg and for my nephew and for all the other people who's lives are touched by epilepsy, my family had a fairly impromptu Purple Party last night and we will be showing our support on Purple Day.

If you want to help change lives and create better futures for young people with epilepsy, why not make a Purple Pledge.


Purple Day 26th March 2010
National Epilepsy Week 15-22 May