Callum was born on the 3rd of October 2007; his first months passed by as they should until December 28th when Callum had his first fit.

He was discharged home from Hospital on New Years Eve 2007 with the diagnosis of Lissencephaly. The word lissencephaly is derived from the Greek "lissos" meaning smooth and "encephalos" meaning brain. The human brain normally has a convoluted surface.

In Lissencephaly these convolutions are completely or partially absent from the brain, or areas of it, have a smooth appearance. The convolutions are also called "gyri" and their absence is known as "agyria" (without gyri).  In some cases convolutions are present, but thicker and reduced in number and you may hear the term "pachygyria" (broad gyri) being used. The diagnosis is usually made with the help of a CT Scan or MRI Scan of the brain. Recently, Callum was more specifically diagnosed with Liss1 with subcortical band heterotopia. Lissencephaly and subcortical band heterotopia are closely related cortical malformations and are true disorders of neuronal migration.

During 2008 Callum followed his own path which, more often than not, lead him and his family straight back to Sheffield Children's Hospital.

During the summer of 2008, Callum endured a course of steroids to try to bring his seizures under control. This has had side effects, and means that although Callum is just 18 months old, he needs clothes for age 4 to 5 years and  specialist nappies. Whilst the clothes are not so much of an issue, the nappies are specially ordered, and therefore cannot just be bought from the local supermarket.

The fact that Callum is growing faster than other boys of his age, also presents his parents with a challenge, at what others would consider routine times of the day. Bath times are a two person job, getting Callum in and out of the car is almost impossible without a specially designed car seat, and taking Callum upstairs at bedtime can be physically demanding on an already sleep deprived young family.

Around his first birthday, Callum was Christened at Aston All Saints Church. He behaved beautifully, even when the Rector ruined his neatly gelled hair with the holy water!! Poinient words from Callum's Grandad John struck a cord with the entire congregation....

"Callum as had a difficult year and suffered many setbacks. He's fought his way through all of them. Hopefully his next year will be less traumatic and he will be able to put all of his energy into full filling his potential.

I'd now like to say a few words on behalf of Callum.....

To anyone who spends time with me. Please be patient with me . Talk to me, touch me, stroke my hands, my body, my chin. But please be patient. You will then see my beautiful blue eyes sparkle, and my cheeky toothless smile. That is a picture to behold. 

To Mummy: Don't ever change and look after me just as brilliantly as you have up to now.  I love you loads xx

To Daddy: Don't be sad any more and lets enjoy what we've got, which is more than enough. I love you loads xx

To Big Sister Bethany: I love it when you play with me, talk to me and cuddle me. Please never stop. I love you loads xx

I'm now going to tell a story called 'Welcome to Holland'.
It was written by Emily Perl Kingsley in 1987, a few years after the birth of her son, Jason.

I am often asked to describe the experience of raising a child with a disability
- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.........

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland. "Holland ?!?" you say. "What do you mean Holland ?? I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."

"But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language.

You will meet a whole new group of people you would never have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

***************

Afterwards, a great afternoon was enjoyed by all of Callum's close family and friends at the Holiday Inn, Rotherham.

In January 2009, Callum was registered blind.  He has Cerebral Visual Impairment, therefore his visual functioning is not consistent and although his eyes are structurally OK, his Lisencephally means that he cannot process the information he sees.  He does however like lights and gains a lot of pleasure from sensory toys like projectors and enjoys listening to music.

Callum's seizures have proven very difficult to control despite trying numerous different types and doses of medication over the past few years.  Unfortunately he still fits several times each day and night.  Callum deals with them in his usual uncomplaining manner and they usually cause little disruption to his daily routine. 

Callum has bad reflux which effects his ability to accept food orally, and following an extended period of being fed through a nasogastric tube, Callum's Mummy and Daddy had to make the difficult decision for Callum to undergo a serious operation to insert a gastric peg directly into Callum's stomach so that his food and fluid intake can be properly managed.

In May 2010, Callum underwent a Fundoplication, an operation to stop him refluxing and vomiting.  THe operation was a success and Callum is now much happier and able to keep all of his medications and milk feeds down.

Callum's parents (Carl and Leanna) are doing a fantastic job, and they do everything in their power to maintain Callum's quality of life whilst also ensuring that Callum's older sister Bethany gets the love and attention that she requires/deserves. They are fortunate to have the love and support of Callum's Grandparents, who do whatever they can to help out.

Callum has now finally been granted a place at the Bluebell Wood Children's Hospice. He and his family will make thier first visit in April 2009, with a view to Callum spending the night at a later date, in the hope that Carl and Leanna will be able to relax and take a little time for themselves.

Through it all, when he's 'well' Callum is the happiest most contented little man and he is a pleasure to spend time with. He never complains about the endless doses of epilepsy medicines, the lack of sleep, the peg in his stomach or much else really. He saves his biggest smiles for his big sister Bethany and loves nothing more than when she is making a fuss and playing with him.

Who knows what the future will hold but this little man is 'special' in all the ways you can possibly imagine.