Monday, October 13, 2008

If you are a newbie to mitochondrial disorders please read!

First let me start by stating that it is really hard to find out your child has a mito disorder, esp. when a lot of us have no true diagnosis. One thing to remember is that you are your child's best advocate and no one will tell you everything you need to know in one place. Always research as much as you can. Here are just a few things to get you started:

1. Visit this site to learn as much as you can.

2. Did you know that a mito diagnosis (even if you have one but the exact one is unknown) you qualify to join the Muscular Dystrophy Association? They can help you with multiple things including helping with equipment that you cannot afford or insurance won't pay for. They also have summer camps for children 6 year old and older. They have local chapters for you to apply at. Check them out here.

3. Your child can also qualify for the Make A Wish Foundation or other wish granting foundations. This was a real revelation for me because it reminds you how serious this disease is. Check them out here.

4. See if there are any clinical trials in your area by checking here.

5. Join a local support group. You can find some here.

6. Read through all of my links on the side and they will lead you to hundreds more.

7. Do you have your child on supplements or a "cocktail" of supplements? They usually consist of something like this: Co Q 10, Riboflavin, L- carnitine, and other high dose vitamins. If not then talk to your doctor right away to see if they apply to your situation. You can learn more here.

8. NEVER give up hope that something will help you and keep trying.

1 comment:

The Fritzemeiers said...

What a wonderful blog you have set up here, Kelly! Olivia is si blessed to have you as her mom!!!