Posts: 7,752 | Threads: 3,202
Joined: Oct 2009
Reputation: 11

  • Administrators
Well December 2010 spotlight nominations were slightly flawed once i put myself forward for nomination Blush
And i was nominated for Decemember 2010 so here goes:

1) Tell us about your Childs disability and age?
Euan is 3 years old and has a rare condition called cystinoisis which is a very rare condition with under 2000 people worldwide having the condition.
The condition causes damage to organs such as the kidneys, eyes, muscles, pancreas and brain.

2) Tell us about the day you got the diagnosis?
Well diagnosis day was a complete and utter bolt from the blue.
Euan had various problems since birth and was under health proffesionals monitoring his health.
At the age of 5 months Euan started losing weight and developed failure to thrive and for over 7 months we were on a long journey and test after test and we kept getting the all clear on many tests and they made us feel like we were not feeding him properly but after another test when he turned one they had a diagnosis.
On the day itself we went to the local GP as we were so fed up of getting nowhere and feeling like noone was intrested and were just leaving him to waste away the gp that day actually said to us very rudely "Well what is it you expect me to do"
I walked out of the GP room and complained to the receptionist who when we left called Euans specialist to discover the specialist had been trying to call us all weekend with urgent news.
So that day we attended the local hospital to speak with the doctor and the doctor obviously seemed he had something bad to tell us and we were really worried and he said we believe Euan has a condition called cystinosis and said i will write down the name of the condition and you can look it up he then said he had made an appointment to see a specialist at Birmingham Childrens hospital the next morning.
Nothing else said about the condtiion but as soon as we got in the car we were googling away and found the devasting news about what his condition entailed.
I remember driving to my mums that day to pick up our eldest numb and speechless and when i nearly got to my mums we had to stop at some traffic lights and bang it just came i burst into tears and couldnt stop.

3) Who was the first person you told about your Childs diagnosis and how did they react?
My mum----
As my mum had looked after Emily when we went to the hospital we had to pick her up after the appointment.
I remember walking into my mums house and keeping it together and i walked into the kitchen and my mum said whats wrong and for the first time in over 12 years i clung to her and burst out crying and couldnt stop and this was just so strange as the years before all this we were very distant as she was an alcholic at one stage and yet this day it was my mum who i needed to hold me and be a mum and it was just so raw i couldnt believe the pain i felt.
My mum reacted in a typical mum way which was to try and tell me all the positive things she thought i wanted to hear.
Whereas in all reality i could have cried for days and i did Sad

4) What is your Childs biggest achievement to date?
We are often told by Euans consultant that children with his condition will not do certain things and cannot be expected to do certain things.
We were told Euan wouldnt eat food like an average child and would require pump feeding all the time.
We were told Euan wouldnt grow at all yet whilst hes smaller than a typical 3 year is still growing.
We were told so many things and Euan has defied most of the things and achieved far more than we expected or what the doctors expected.
Yes he has a significant delay in most areas of development but he leads a happy life and one which really keeps me smiling even on those dark days.

5) What 3 tips would you give to parents of disabled children?
A) Be prepared to fight for whats right for your child.
B)Get as much support as possible and dont be afraid to ask
C)If you ever feel down or depressed realise you are not alone and with the right help and support there are ways to get through this i wont lie and pretend problems go away but sometimes having help can help you deal with things.

6) What has your Childs disability taught you and how has it changed you?
Before Euan became ill i cruised along in life with regard to only me and my family and was quite a selfish person in terms of not seeing what real life is about.
But i was also young so things do change as you mature but i feel that Euans diagnosis really gave me a new outlook on life where i want to help to help others in whatever way i can and believe that we as a family have made some true friends because of this.
We are more socialable with people in similar circumstances and they have made our life more fulfilling.
Although in some ways its changed the impulsive life i once ran for example where if we wanted a last minute holiday we went whereas now its a military operation with medications etc so yes its also added some bad things.
I think thats one of the tough changes is that you have to plan everything to the finest detail so sometimes i can feel a little dull for my age.

7) What did your Childs diagnosis change in terms of your dreams for the future?
Well we always said we wanted 4 children and to eventually move away from Birmingham but now.....
The 4th child idea is very clouded lets say due to the worries of having another child with cystinosis but even if we didnt have a child with cystinosis we still have so much to take into account such as what would happen if Euan was admitted?
When should we have another child because Euan will need a kidney transplant at some point and it would be a disaster if Lucy was pregnant at that time of that or would the baby still be too young when we would need to be up hospital too much?
Would having a 4th add more stress onto a very overloaded stressed house and how would be cope?
So for now baby number 4 is very much a want but sadly i dont think i can really see it happening as the time will never seem to be right.
Also we wanted to leave Birmingham but this also seems like it will never happen as we would have to consider so much such as hospital locations as its such a specialist condition there are very few specialists so if we moved away would require very frequent visits back.
Also schooling as he has what i currently think is the best possible staff and teachers and wothout these he would have to go to a non main stream school for sure but as its a unit with such dedicated staff we know he is safe here and wouldnt want to risk upsetting this.
So for now we are stuck in Sunny Birmingham.

8) You run the country and you have the power to change ONE thing what would it be?
I would remove the damm right annoying barriers to everything.
Everything is one big fight so i would ensure that all children with disabilities had on demand access to a specialist social worker trained to be there from day one with automatic referals being made at point of diagnosis so that all parents are made aware of services from day one and are given the help and support they need with everything from housing to benefits and all the other things that come along.
At the moment the system relies on parents finding out what help there is whereas i think the goverment and health proffesionals have an obligation to support from day one and ensure parents know about services as standard rather than having a lucky dip with certain services.
I just think how hard is it for it for a specialist social worker to arrange to visit all newly diagnossed disabled children and make a brief assesment with a form asking questions about current benefits,education,housing etc and once that form is done the social worker devising a plan to help that family?
Not really rocket science but would help so many

9) What organization has delivered excellent service when dealing with any aspect of your Childs disability
Well i think our sons local peditrician who has been there from day one has always been there for us with all sorts of questions and answers along the way.
There were times i did doubt him as he is old school but looking back he has been the best doctor we have ever seen and still see.
He always ensures Euan gets seen by relevant people quickly and is such a warm and kind person who i class as a family doctor with our whole family able to call upon him.

10) Have you ever had to fight for something to help your Childs disability?
We seem to forever be fighting and always chasing someone or fighting something or someone to help Euan is someway and quite honestly it stinks.
Why is the system set up to add pressures to parents already under high stress.
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE
Posts: 449 | Threads: 65
Joined: Mar 2010
Reputation: 0

  • VIP
Very interesting reading, thanks for sharing! Big Grin Merry Christmas!
I know what you mean in terms of moving away, at one point I liked the idea of moving to Lincolnshire to be near my best friend, but its just too much what with schooling and hospitals.
Heart Raising the awareness of encephalitis, one baby step at a time.....Heart
Posts: 300 | Threads: 62
Joined: Jun 2010
Reputation: 0

  • VIP
Tanks for telling your story,Euan is lucky to have you and Lucy fighting his corner!
Posts: 287 | Threads: 48
Joined: Jun 2010
Reputation: 0

  • VIP
thanks for telling ur story it was lovely to read.
Posts: 23 | Threads: 2
Joined: Sep 2010
Reputation: 0

  • Established member
That was really good to read and sounded very honest

Users browsing this thread: 1 Guest(s)