Along my life path I've learned that learning from others and sharing is the most powerful thing.  If one fails...learn how and avoid those mistakes if possible.  If one succeeds... learn how and do what you can to replicate it in your life.

To learn from others and to receive up-to-date information, I've signed up for several enewsletters and "to receive information".  Today, I got a a package from Red Chip Enterprises with many different books for me (as a parent) and for my son to help us live a better more informative life.
 
Here are the titles of the books that just arrived:

• What to expect during the Primary School years
• Teaching the Educators
• Just a Boy
• Dental Care
• Alexis, The Prince Who Had Hemophilia
• How Children Understand Hemophilia
• A practical guide
• Teach Your Child

Thank you Red Chip Enterprises for all this incredible material.  I am looking forward reading all the books to learn and to share with others how to make the lives of our children with Hemophilia as pain free and as free as possible.

An Open Letter To A New Hemom... Tatyana Hi Tatyana,

No need to thank us. We thank you for finding us and we are so grateful to have made a difference in your life. 

I guess, I'll start by saying, we all had the same fears when we first came about the news that our precious children are affected by the condition... Hemophilia. 

For years, I've tried to find answers too. Tried so hard to get understanding for it. It took me a while, nevertheless, worth every effort. Through the help of my son's medical team, treatment centers, other Hemoms, volunteers and the entire hemophilia community, our family was able to survive the nightmare. I always thank God for that! I always thank Him for guiding us in our way through our darkest moments.

My son now is in college. He was diagnosed with severe Hemophilia A at age seven. Currently a 3x National champion in golf, living a normal life through prophylaxis treatment of his meds, Helixate FS. Never better... We are so proud of him!!!

We Hemoms are here for you. We are here for each other. Feel free to ask questions and each one will be able to help guide you through your journey, as they have for mine. We have a website that you can always visit as well with our stories, at www.hemophiliamoms.com. I'm sure you'll find the site not just informative, but also full of resources. I guarantee you that it will give you, not only peace of mind and assurance, but also the greatest gift you can possibly imagine... Hope.

Take care,
Jenny Posted by Jenny at 10:20 PM 1 comments: Suzanne said... Tatyana,

I hope you find comfort in knowing you are not on this course alone. Jenny gave you the best advice there is....get connected. My 10 year old son was a spontaneous mutuation and was diagnosed at birth. Finding and getting involved in our local Treatment Center, local Hemophilia Chapter, support groups and this web site saved me. I just said the other day that "It takes a village to raise a child" and no truer words have been spoken. I am blessed with a very supportive family but it just isn't enough sometimes! I needed support, encouragement and advice from those who have walked a mile in my shoes. Understand the fears and anxiety we are experiencing as Mom's and can encourage through experience. Thank you for sharing your story with us and we would love to hear from you. My son leads a normal life thanks to modern medicines like Helixate FS. He plays baseball, golf, basketball, swims and is active in almost every area in school. He's a boy. Welcome to our family of Hemophilia Moms.
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