#1
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1) Tell us about your childs disability and age?

My name is Mags, I have been married to Gary for 10 years. We have 2 children, Ash (11) and Zak (2). Zak has severe spastic quad CP, Lennox gastaut syndrome and is registered blind. It's been an interesting road so far, one with many ups and many downs, but we are just glad to have him here to enjoy the ride.

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


Zak was originally diagnosed with HIE grade II (Hypoxic Ischemic Encephalopathy) caused by getting stuck during delivery. From then the diagnoses just keep coming. At 2 months he was diagnosed with Spastic quadripegic Cerebral Palsy. At 3 months Severe reflux. At 4 months West syndrome was diagnosed, which was a real shock. We knew he had seizures as he'd had them since birth, but this was such a rare and devastating diagnosis which when added to the CP left his future looking quite bleak. At 18 months his seizures became uncontrollable and he was diagnosed with Lennox Gastaut Syndrome, meaning his seizures were not controllable and he now suffers many daily seizures of varying types. The treatment for the Epilepsy was brutal and left him registered blind. He is Gastrostomy fed and is profoundly developmetally delayed (sub 3 months on last report). He has no control of movement at all, can't smile, talk or even hold his head up...and he is now 3 years old.


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

My husband was devastated when we were told the news. We were told just half an hour before visiting at the hospital and because Zak was in the HDU we were only allowed 2 visitors at a time. My family all came at the same time, and we tried so hard to say nothing till we knew more detail, but my husband broke down and we had to tell them. My Dad was very angry. He needed someone to blame, and wanted to find the person resposible. He almost got thrown out of the hospital, but thankfully he realised that that was not the time nor the place and calmed down. Everyone was very supportive, and tried hard to find the positives and make us smile. Which we did plenty of.


4) What is your child biggest achievement to date?

Just being here, and despite his long and growing list of diagnoses, he is a very healthy little boy. We had been told that he would suffer lots of chest infections, pneumonias and problems with his heart and lungs, but he has beat all odds, and is very rarely even poorly. In fact he is healthier than our daughter ever was by the age of 3.


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

Try hard to look forward, not back.
Find the positives in as much as you can. Life is too short to dwell on the what if's.
Always remember that no matter how bad things get, there is always someone worse off than you. Be grateful for everything you have.

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

The phrase "stop and smell the roses" is so true, and a privilege. Having a child like Zak has helped me rediscover all the blessings in life. I can't work now because Zak needs full attention 24 hrs a day, so we have time to get out into the country and enjpy life, making the most of every day.
My motto now is "they can never have yesterday". It's from a song by Leona Lewis. "They can take the future and the plans we made, they can take the music that we never played, all the broken dreams, they can take everything, but they can never have yesterday"........None of us know when yesterday is all we have left, so don't waste it.


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

That it's not all about the money, or the modern clothing, or having the best job and big house. It's about the small things. Being happy, healthy and surrounded by family and friends. It's about smiles and laughter, and the realisation through the eyes of our very special children, we get to see the world a little bit differently....better and much more colourful.


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

Instead of having to fill in form after form after form for any financial help we might need. I would replace that with a friendly face to face visit, a cup of tea and actually getting the so called experts to meet the child that they are making decisions about. No more form filling for the parents, we have more than enough to do without having to constantly regurgitate what is 'wrong' with our children.


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

Derian house childrens hospice in Chorley...second to none. We are made feel very welcome on every visit. They care for Zak in the same way I try to, and he is not the 'poor little boy with CP', he is just Zak.


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

I count myself very lucky that the area we live in have a great PCT, and if we have needed anything, we have not had much of a fight on our hands. Added to that I have a very big mouth, and I have learned over the past 3 years a few clever little tricks when it comes to getting my own way. It doesn't always work, but so far my wee man has everything he needs, and a happy family to love him.
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#2
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WOW!!! What an inspiration you are - lots of the things you have said are very familiar, I wish I could only meet you and chat over cup of tea and learn a few tricks !!!!! I wish you all the best for the future you sound like a truly amazing mum.
ps my sons consultant always writes "LEnnox Gastuat Syndrome" on my sons report as one of his diagnosis and I always get upset when I see it, as he hasnt officially been diagnosed with it (EEG), but has the different types of siezures CPS, Atonic (drop attacks), Myoclonic and Absences, has been on multiple meds, but has now got a VNS to help control them and at the moment he is the best he has been in a long time (we have been down the steroid dependancy road, and it was not very nice). All the best - Niki xx


(06-21-2010, 07:37 AM)Daniel Wrote: 1) Tell us about your childs disability and age?

My name is Mags, I have been married to Gary for 10 years. We have 2 children, Ash (11) and Zak (2). Zak has severe spastic quad CP, Lennox gastaut syndrome and is registered blind. It's been an interesting road so far, one with many ups and many downs, but we are just glad to have him here to enjoy the ride.

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


Zak was originally diagnosed with HIE grade II (Hypoxic Ischemic Encephalopathy) caused by getting stuck during delivery. From then the diagnoses just keep coming. At 2 months he was diagnosed with Spastic quadripegic Cerebral Palsy. At 3 months Severe reflux. At 4 months West syndrome was diagnosed, which was a real shock. We knew he had seizures as he'd had them since birth, but this was such a rare and devastating diagnosis which when added to the CP left his future looking quite bleak. At 18 months his seizures became uncontrollable and he was diagnosed with Lennox Gastaut Syndrome, meaning his seizures were not controllable and he now suffers many daily seizures of varying types. The treatment for the Epilepsy was brutal and left him registered blind. He is Gastrostomy fed and is profoundly developmetally delayed (sub 3 months on last report). He has no control of movement at all, can't smile, talk or even hold his head up...and he is now 3 years old.


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

My husband was devastated when we were told the news. We were told just half an hour before visiting at the hospital and because Zak was in the HDU we were only allowed 2 visitors at a time. My family all came at the same time, and we tried so hard to say nothing till we knew more detail, but my husband broke down and we had to tell them. My Dad was very angry. He needed someone to blame, and wanted to find the person resposible. He almost got thrown out of the hospital, but thankfully he realised that that was not the time nor the place and calmed down. Everyone was very supportive, and tried hard to find the positives and make us smile. Which we did plenty of.


4) What is your child biggest achievement to date?

Just being here, and despite his long and growing list of diagnoses, he is a very healthy little boy. We had been told that he would suffer lots of chest infections, pneumonias and problems with his heart and lungs, but he has beat all odds, and is very rarely even poorly. In fact he is healthier than our daughter ever was by the age of 3.


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

Try hard to look forward, not back.
Find the positives in as much as you can. Life is too short to dwell on the what if's.
Always remember that no matter how bad things get, there is always someone worse off than you. Be grateful for everything you have.

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

The phrase "stop and smell the roses" is so true, and a privilege. Having a child like Zak has helped me rediscover all the blessings in life. I can't work now because Zak needs full attention 24 hrs a day, so we have time to get out into the country and enjpy life, making the most of every day.
My motto now is "they can never have yesterday". It's from a song by Leona Lewis. "They can take the future and the plans we made, they can take the music that we never played, all the broken dreams, they can take everything, but they can never have yesterday"........None of us know when yesterday is all we have left, so don't waste it.


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

That it's not all about the money, or the modern clothing, or having the best job and big house. It's about the small things. Being happy, healthy and surrounded by family and friends. It's about smiles and laughter, and the realisation through the eyes of our very special children, we get to see the world a little bit differently....better and much more colourful.


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

Instead of having to fill in form after form after form for any financial help we might need. I would replace that with a friendly face to face visit, a cup of tea and actually getting the so called experts to meet the child that they are making decisions about. No more form filling for the parents, we have more than enough to do without having to constantly regurgitate what is 'wrong' with our children.


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

Derian house childrens hospice in Chorley...second to none. We are made feel very welcome on every visit. They care for Zak in the same way I try to, and he is not the 'poor little boy with CP', he is just Zak.


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

I count myself very lucky that the area we live in have a great PCT, and if we have needed anything, we have not had much of a fight on our hands. Added to that I have a very big mouth, and I have learned over the past 3 years a few clever little tricks when it comes to getting my own way. It doesn't always work, but so far my wee man has everything he needs, and a happy family to love him.
#3
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Excellent spotlight Mags and well done!
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Wonderful to hear about you and your familys story it is a very inspiratnal a lot of parents who don't have children with special needs could learn a thing or two from you.

Well Done

Bernie
Don't look down on anyone unless your helping them up
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Wow what a great story, such an inspiration!
You are a credit to your family Smile
Hope you are all well and i wish you all the best
xx


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