#1
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Well Father Jack was the winner for the May 2010 spotlight.
The spotlight is a chance to set the same 10 questions for a chosen member each month.
Father Jack is our second spotlight member and feel free to ask any questions to the member.

So here it is.............


1) Tell us about your childs disability and age?

My daughter has arthritis in her joints and lower legs which has meant she increasingly needs to use her wheelchair and an un named hormone imbalance that affected her growth until aged 12, I was told she would only live to about 14 years old..... she's nearly 18 now Smile


2) Tell us about the day you got the diagnosis?

My daughter was 8 years old and we went through months of hospital visits, blood tests, urine tests and almost every type of scan, the specialist at AlderHey asked a nurse to take her to choose a book while we talked..... I dont remember driving home that day but I obviously did some how. I decided not to tell her the prognosis, If I was finding it impossible to accept then how could she deal with it?


3) Who was the first person you told about your childs diagnosis and how did they react?


My sister, who lived in Oxfordshire at the time, she was as shocked as me I think and we arranged to go down for the following weekend so I could at least try and make sense of the situation.


4) What is your child biggest achievement to date?

She is almost 18, studying to be a vet and looking forwards even though sometimes mortality takes over and she feels like she's on borrowed time.



5) What 3 tips would you give to parents of disabled children?

- Specialists are human, they really dont know everything!

- DWP actually stands for Dont Want People, all they want are pieces of paper to shuffle!

-Ask the same question twice, you get 2 answers Smile

6) What has your childs disability taught you and how has it changed you?

That life is for living, I used to work up to 16 hours a day, pay a nanny and miss my daughter like mad..... now I work from home, am always there when needed and life is so much better Smile


7) What did your childs diagnosis change in terms of your dreams for the future?

I did spend years wondering why it had happened, how much of the world we could get to see before the inevitable, what would I do without her...... now we enjoy each day, deal with whatever comes our way and pass on as much happiness as we can.


8) You run the country and you have the power to change ONE thing what would it be?

Get rid of poxy dwp forms!

9) What organisation has delivered excellent service when dealing with any aspect of your childs disability?

Our GP has been great, he always makes time, checks we know all our options and genuinely cares both about my daughter's health and well-being AND my coping.


10) Have you ever had to fight for something to help your childs disability?

I have been lucky with material things, having a good income meant we did pay privately for some of the tests but an actual fight? I am glad we didnt get to that stage
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#2
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Father Jack - that was lovely! What an inspiration you and your daughter are! I loved your 3 tips too - made me smile for the first time during my angry morning! x
#3
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(05-20-2010, 09:54 AM)SusieL66 Wrote: Father Jack - that was lovely! What an inspiration you and your daughter are! I loved your 3 tips too - made me smile for the first time during my angry morning! x

Good, smiling is great...... especially when no-one knows why you're doing it Wink
#4
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that was fab hun Big Grin you must be so proud of her and proud of yourself too for doing it all by yourself Smile

xx
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(05-20-2010, 01:40 PM)Lucy Wrote: that was fab hun Big Grin you must be so proud of her and proud of yourself too for doing it all by yourself Smile

xx

I am proud of my daughter, she truly did fall from heaven and brought so much to my life...... still does every day Smile
I dont think any of us is truly alone (although it feels that way at times) .... people in the most unlikely places have said and done things that made everything OK


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