Mitochondrial Disorder Information

MITOCHONDRIAL DISORDER - The Facts Fiction And A Way Forward

There are literally thousands of doctors and researchers around the globe working on finding a cure, progress is being made every day.

There are also many treatments that consist of vitamins and other medications that are making remarkable progress in improving our childrens health.

The website is dedicated to parents and extended family members informed their child has a
mitochondrial disorder.

I started this website because when doctors informed me my son Jack had a suspected mitochondrial respiratory chain disorder, they could not provide me with any information and there was no mitochondrial support network in Australia. This site is dedicated to parents in Australia and around the world. We are linked thru a common cause.

My journey started in 2004 and continues today with a healthy little boy still searching for a cure and fighting for a normal life.

I hope this website on Mitochondrial Disorder information helps you find the answer you require.

CURE MITOCHONDRIAL DISEASE

A Mitochondria one of hundreds within a cell:

Find out about Mitochondria: Click Here

The White Family
'VISION'

To find a cure for Mitochondrial Disease
and
Save Our Son

and our
'MISSION STATEMENT'

Click Here

"At no other time in history has there been A GREATER OPPORTUNITY to find a cure, we have the resources to cure this disease, so now is the time to act, Together we can do it..."

Jack's Mum and Dad
Have you been finding it difficult to find reliable information on Mitochondrial disease in Australia? Be assured you are not alone. There is bugger all info available however; there are so many questions to be answered and those that are answered are only followed by many, many more difficult questions.
In this website you will find our story, Jack's journey from a regular little boy at birth to a beautiful little boy almost two and a half years old and now fighting a war with his cells; cells that fail to produce enough energy to enable him to live what is considered a normal life. We were informed by one of Australia's leading Paediatrics Specialists in Genetic Disease that (at best) Jack had up to three short years to live - this I refer to earlier as fiction.

Jack's Story - Click here:

We have endeavored to try and list resources and weblinks that are available and give some idea of what may be a logical process to start finding your own answers. Given that this is a very complex disease and each person afflicted has a different histological background, the presenting symptoms may be different and as a result treatment will vary and the resulting outcome will vary. This list of resources is not conclusive but rather a work in progress.

If after reading through the website and digesting the content and considering the links, you believe some of your own resources and links would help us with our cause, please contact us. We would love to hear from you!

Resources - Click here:

Mum's page: Charmaine lists resources and information that are of benefit to mum's and carer's trying to deal with all of the different aspects of caring for our children 24 hours a day whilst still trying to maintain a normal household.

Mum's Page - Click here:

Dad's page: This page has been designed with resources for dad's trying to deal with the issues of watching our children struggling with genetic disease and the additional burden this brings

Dad's Page - Click here:

You will also find another page that lists other tools that may be of assistance. As Jack's Dad (Trevor), my concerns are not just limited to finding a cure for Jack but also providing for my family. Only a couple of years ago we were a regular family with few concerns other than starting building a prosperous future.

Shortly after Jack's birth all that changed. Not only were we experiencing enormous stress and uncertainty about our son's future with few answers to our questions, but we also found ourselves with an increasing number of expenses.

Our lives changed from building a future to the more important subject of saving our son and surviving the present. The Resources page lists amongst other things, advice that helped us start dealing with the present situation and monetary concerns.

You will find checklists, budgets, loan calculators, website building tools and knowledge building ebooks and science papers.

There is also information on building ebooks, multimedia information tools so you can send video stories to your family or have your child's story hosted on this website and have your story available to family and friends around the world.

Find out how to build a website like the one your reading. I also discuss how we have found other ways to generate income as my wife Charmaine is now Jack's full-time carer.

You will find many links that we've found invaluable and hopefully if you've hit a brick wall this may provide a window to new ideas and a little bit of hope.

Resources - Click here:

Newsletter and Blog - started for distant relatives, Grandma and Grandpa. You can be added to the Mitochondrial disorders blog simply by adding the RSS feed to you blog reader. In return you will link to this Blog and receive highlights about new research into mitochondria and Mitochondrial treatments, You also receive videos of Jacks conquests and achievements at conductive education school and other resources as they are found.

You can also access the blog from this site on the Blog Link. Be prepared this is just the raw situation in our life no fluffy bulls##t.

The Mitochondrial Disorder Information Newsletter, "Aussie Mito Mates" the current aim is to produce four newsletters a year. This will provide answers to general questions from parents and carers, the many what if's that we face as a daily challenge.

We will also include new research, updates on mitochondrial treatment and equipment that we have seen or used, this includes trial reports from other parents.

Parent input and parent-child equipment reviews will be a feature of this website that will be active soon. The only reviews worth reading are ones written from the trenches by hard working sleep deprived parents, theres no fluff just cold hard facts. The best articals and reviews will be hosted in our newsletter. Rest assured you will not be inundated with daily newsletters full of trivia, as I'll be pushing you know what up hill just to write four.

Newsletter - Click here:

I believe your job as a parent to find smart well informed medical professionals who have a positive outlook and are prepared to look for or create new solutions to improving our children's health and ultimately finding a cure to mitochondrial disease

Just because your ill informed negative thinking health professional has probably given you a horrible and negative outlook for your infant or child straight from the manual of "doctors advice to parents regarding genetic conditions "

This advice does not mean it will occur, it is only one mans opinion. I have endured too many doctors tell me the worst only to see my child prosper.

My advice use our resources to find a positive forward thinking medical professional. This will make it easier for you and your family moving forward

If your know of a fantastic doctor or team of specialists who are interested in helping kids with Mitochondrial desease well let us know and we'll place this information on the resources page.

The more people in our situation who are given the correct information as quickly as possible will only benefit us all. A member of our large MITO family will one day soon find an answer and a cure.

I hope that person is YOU and your Family.

Mitochondrial Blog
This blog details recent news in mitochondrial research, mitochondrial treatment, mitochondrial medication, and mitochonria specialists around Australia and the world.

What is Mitochondria?
What is Mitochondria explains how Mitochondria form part of the cell responsible for energy production

Jack White
Jack White my son the inspiration for this web site

Dads page
Dads page information on mitochonria and the road ahead, planning tools and some considerations for the future

Mitochondrial Resources
Mitochondrial resources - has many valuable PDF's, downloadable from this site, lists information websites and early intervention schools and equipment providers

Website Links
website links lists mitochondrial websites that we have found useful

Team Jack
Jack White, important people in Jacks life

Internet Tools
Internet Tools - lists all the resources you require to build your own website, ebooks, information products

mitochondrial ebooks
mitochondrial ebooks - information resources that we found useful

Newsletter
Newsletter for parents of children with a mitochondrial disorder

Early Intervention Programs
Early intervention programs can improve your childs chance at a normal life

Dads Against Disease
Dads against disease, funding research to find a cure

advertise
Advertising policy and conditions

Contact Us
To contact the team at Mitochondrial disorder information

Mums Page
Mums Pages

Mitochondria Books
Easy to read parent friendly books on Mitochondria and medical references

Donate
Donate to improve the lives of children

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