I would like to thank everybody who watched the Jeremy Kyle show this morning (15/July/2010) and contacted me with such kindness and support. Cath and I are touched that so many people took the time to contact us through the contact form on our website, or leave us a messages in our Guestbook.
Each day that passes Helaina is an inspiration to us, her smile lights up our days, and each day that passes is precious, to be savoured and enjoyed.
I don’t know what new challenge tomorrow will bring, if some new medical complication will occur. But what we do know the past 16 years has been a roller coaster ride.
Our aim is to help and support as many families as we can, and we can only do that with the support of the public making a donation to our charity, or helping us to spread the word about our work and Costello syndrome.
So if you have a blog, a website or are on Facebook or Twitter, please help by adding a link to us, or tweeting about our site.
Last week we went to the ITV studios in Manchester to appear on the Jeremy Kyle show. The staff on the show looked after us well, and JK although very busy was great. The show was about exceptional children. Helaina was amazing, she stole the show, answering all of the questions like the professional that she is. Full of confidence and shined, though our nervousness was evident.
We do not have a broadcast date yet, it should be on air sometime Early July.
We were honoured to be asked to do the show, especially as we move towards the first UK conference, if one or two families who have no access to the web see the show and realise that there are others facing the same issues they are, and that there is support for them that will have made it all the more worth while. That said telling Helaina’s story has since the recording had an even bigger impact on my life. For the first time in many years I have felt a weight has been lifted, for the past few nights I have slept well, and deeply. Our story told the past now firmly behind us, we can look to the future and the joys that it will bring.
Spring is in the air in the air, and with the spring comes birthdays and remembering times past good and bad. On the 14th of June 1994, after 8 years of fertility treatment my life changed, Joy and wonderment as I held my daughter in my arms for the first time, yet sadness that her life would not be the same as other children because she had an unknown medical disorder.
Through all the worry about health and her future. With her 16th birthday coming up , brings the realisation that this once fragile, and in many ways still fragile young lady is growing up.
For many years she has attended a drama class, this has done more for her development and confidence then any speech therapy could have done. 3 weeks ago she decided that she wanted to do something different, so she quit drama, and now attends a youth club. What is so special is that for the first time she is doing an activity without mom or dad, I am even excused being her personal taxi driver. She has an assistant who collects her and helps her with her needs. She does stuff like any other teenager and returns home sleepy and content with a grin that would make a Cheshire cat jealous.
Soon she will be doing one weeks work experience, something way back in the dark distant past when we received the diagnosis that she had Costello Syndrome, we never thought she would ever do.
The video Below was made and broadcast in the summer of 2008, you may have seen it already if not I hope you enjoy it. If you have then why not watch again.
Thank you dear reader for visiting this small place on the internet.
I was asked a question today about the significance of the dance video I posted yesterday. It is hard to express in words why this simple act of dancing in a competition was such a significant event. So I finally decided to make this short video public. The video was made for the medical symposium held along side the 2009 conference. I will leave the video to express the feeling and emotions as to why the dance competition was so important.
How hard can it be to take a good picture on demand. All though I consider myself to be quite a good snapper.
I am always armed with the trusty digital camera, just in case a good shot comes along. Sometimes it can be very very difficult to get the picture that looks just right.
We had a problem, my wife Cath needed a head and shoulder photograph for a press article. Simple enough, reach for the camera, snap, snap and snap again.
Unfortunately it was not that simple. All the photographs I took were poor and looked wrong.
The previous day my daughter Helaina had been taking some pictures.
This is the picture Helaina took.
That daughter of mine has a great eye for a good photo.
Guess which picture will be sent to the reporter?
Yes.. you guessed it will be the one Helaina took.
