There is all kinds of information out there for new parents.

How to change a diaper.

How to prepare a bottle.

Even how to breastfeed.

But there is little information about what to do when your child is given a rare diagnosis.

I never thought that doing an MRI would discover an extremely rare condition in my son.

Since then, I have learned how to be like a cougar.

I’ve had to hunt high and low for the best neurosurgeons in the country,

I’ve had to track down the latest information about my son’s condition.

Searching through my son’s medical documents has even been like a ……

1. Take It All In

Getting news about a diagnosis that you don’t expect can be heartbreaking.

It can also be overwhelming and make you feel as though you’ve just walked straight into a tornado!

Sit and soak in what the hell just happened.

Go over any information that the doctors just told you and write it all down.

Writing it down may lessen the amount of time that you are staying up at night going over it all in your head.

And, let’s be real, you need your sleep!

Especially if you are about to embark on a rugged journey such as the rare diagnosis route.

Your Brain

Even though the doctors probably just explained the condition to you, you more than likely will need more information or for that information to be repeated.

Sometimes doctors speak in medical terms instead of layman’s terms and I know that I am one who needs layman’s terms!

Get all of your questions together in your head.

Some of these may be:

  • What exactly is my child’s condition?
  • What is my child’s prognosis?
  • What kind of treatment will my child likely need?
  • Are there any specific medical professionals who are highly-specialized in this area and how do I contact them?
  • What type of care will my child need going forward?
  • What adjustments at home and at school will my child need?
  • How should I explain this to my child?
  • What will my child’s future look like?

You may want to write these down so that you can ask the doctor the next time that you have an appointment.

Or give the nurse a call and ask for a time to be scheduled so that you can speak with the doctor over the phone and get your questions answered.

Soak it in

Sit and think and let yourself gather your thoughts about the diagnosis.

Cry, if you need to.

Treat yourself to a candy bar or ice cream or a binge watch of your favorite show.

Take some serious time for yourself so that you can strengthen your soul.

You are about to be the biggest advocate for your child and like a cheetah hunting for the very best.

Get yourself in order now so that you can lunge forward, head-first, into getting your child the best help possible.

2. Start Your Research

I truly believe that the number one of the best things that you can do is to research about your child’s condition.

If your child has a rare condition, chances are that even some of the most trusted doctors do not know much about it.

That is where you come in!

You have to aim to be one of the most knowledgeable people in the world about your child’s condition.

Now, no, you don’t have to go to med school!

But you sure can learn a hell of a lot by reading research articles, interviewing medical professionals and reading stories about other people who have the condition.

Take in every bit that you can because it will help you to make some tough decisions later on, if need be.

My son’s condition is extremely rare and I stay up late every night reading as much as I can about it.

I have also made numerous phone calls to state-of-the-art facilities across the country to see how they can help.

Even just the littlest piece of information from one professional can go a long way!

3. Don’t Be Afraid

A doctor who you trust may suggest someone in the area.

Or perhaps you don’t want to have to go far for care.

If you can physically and financially – go far!

Go to the best places possible where they are the most experienced in your child’s area of concern!

At first, I tried to stick with local hospitals and even ones that were out of state, but close by.

Ultimately, I realized that I may have to go to the other side of the country if I wanted to get my child the very best care!

That’s okay.

Whatever it takes, right?

We may just go with what the first doctors tell us, but when you really think about it, there’s a whole world out there!

And there may very well be a professional out there who is far more experienced than the ones you are currently working with.

Don’t be afraid to get out there and inquire about other medical professionals!

Remember, you’re a cheetah parent!

Hunt for the best.

4. Prepare Your Child

Again, in order to seek the best of the best, you may have to travel.

Your child may be upset, concerned and confused about what is going on.

Do your best to be honest with your child, but also explain things so that it is not too scary.

My son has a rare spinal condition that will eventually leave him fully paralyzed.

My child understands that there is something not right with his spine and that we are talking to other doctors to see how we can fix it.

I have left out the paralysis part.

Not because I am not being honest, but because he is only 6 years old and doesn’t need to be scared right now.

He has actually embraced the traveling and looks forward to the quests that we have been taking.

Which is good.

I want him to be happy and comfortable for as long as possible.

5. Get Support

Lean on your family, friends and whomever else may be open to helping you.

Because many people care about children, you may find that you get support more easily than you would expect.

Most people love children and will do just about anything to help.

If you are like me and do not have much in the way of family or friends, you can reach out to support groups.

I have found an online support group that has been very helpful.

You can also request a patient advocate from a hospital in order to help you make big decisions.

As my father always says, “Don’t worry about anything. There is always someone out there who can help.”

You Can Do This

When your child is first given a rare diagnosis, it may feel as though there is no way that you will be able to make it through this.

It can be devastating to hear that there may not be much that they can do for your child.

It may be overwhelming to come to terms with the fact that your child may need extra care and may not have the future that you had hoped.

But, despite all of this, you can give your child a very special gift.

You can give your child the very best outcome.

Take the time that you need to in order to gather your thoughts and feelings.

Then be a cheetah and start the hunt for the best care possible for your child!

Do your research.

Seek out the best.

Help your child through.

Get support.

With all of this in your back pocket, you absolutely can face this head on and help your child get the best care possible.



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