Tell us about your childs diagnosis

[Daniel]

Hello Everybody,
I was just thinking it would be helpful if we all got familiar with each other and our children.
If everyone would post their childs diagnosis maybe it will be easier to find each other!!
There may even be someone here with the same problems and i think it will quickly help identify whos who and to see at a glance who is in the same shoes as you.

Lucy will be along shortly to introduce our son Euan.

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[Lucy]

Hi we have 3 children, Emily7, Euan2 and Alfie 4months. Euan has a rare genetic disorder called cystinosis and is also under a child development centre for adhd/asd assessment. He has alot of complex medical needs and also has some behavioural problems and odd behaviours. But despite all that, most of the time he is happy (aslong as things are going this way )

Lucy xx

[Karen]

Hi
I have 2 boys named Daniel 8yrs and Matthew 1, they both have a rare genetic chromosome abnormaility called a 9q34.3 deletion syndrome. and myself has the 9q34 deletion
Daniel attends a school for complex needs/severe learning disabilitys, and matthew attends nursery 3 mornings a week.

can be hard work, ecpecially when the Children dont sleep well. we are involved the a support group through unique and we are going to a study day in april to meet other families who have children that have the same deletion.

[corinne]

hi
i have one son Matthew who is 16!!! i know i dont look old enough lol
he was diagnosed with autism at 2 1/2 after health visitor thinking he had hearing problems not that the hearing tests worked as how do you explain to an autistic child to point to the ear the noise is coming out of?
He has limited speech but that is improving and in the last few years his understanding has improved greatly so compromise is actually in his dictionary now lol. He still rocks and eeeeeee's most of the time when awake (called nanging round here lol) and give him a computer or camera and he amazing especially if its photographing buses and changing the background on the computer.in most ways he is a typical 16 yr old but one that cant leave the house alone due to the lack of danger. but amongst it all he has a smile with dimples that lights up a room and can cheer anybody up :cmas_emoticon066: so wouldnt have him any other way

[Lucy]

(12-01-2009 07:42 PM)Karen Wrote:  can be hard work, ecpecially when the Children dont sleep well. we are involved the a support group through unique and we are going to a study day in april to meet other families who have children that have the same deletion.

I can deffinatly relate to the not sleeping well!! euan is going through what i hope is just a phase of continuous waking in the night and rising as early as 4am some mornings. I end up sleeping in his bed most nights. Also, it is great to meet people who have the same condition when you have a rare one. Our sons is a very rare genetic disorder, we went to a conference about it just after he was diagnosed and it was nice to meet people of all ages with the condition and parents too as they often have handy tips to deal with problems they have come accross!!

xx