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Little Miss Hannah - Our Fight against Gaucher's Disease Type 3

Little Miss Hannah - Our Fight against Gaucher's Disease Type 3

http://www.littlemisshannah.com

Two days after my daughter's birth, she was found to have an enlarged spleen and extremely low thrombocytopenia. Eventually her liver became involved, and she developed slight anemia. Five months later, she was diagnosed with Gaucher's disease, most likely type 3, a very rare (only 10,000 cases worldwide) metabolic disease which could take her away from us in 15 to 20 years...that is not acceptable to us. We are going to fight and do whatever it takes to give her a long, happy, and painfree life.

subscribe Recent Posts

  • Hannah’s gift

    Posted on Saturday December 19th, 2009 at 22:45 in life with gd23

    For the past couple of days, I had been feeling a bit down with everything, especially since we had such a rough travel to and from Dallas.  Knowing we have to make an even longer road trip in a few days to the nursing home (4-1/2 hours each way) to...

  • Tri-annual meeting with Dr. Schiffmann

    Posted on Friday December 18th, 2009 at 09:08 in life with gd23

    Daddy, Hannah, and I went up to Dallas yesterday to meet with Hannah’s neurologist/GD specialist, Dr. Schiffmann.   We last saw him about 4 months ago. It is about a 4-hour drive to get there, and Hannah has really showed us how much she hate...

  • What I would give for just a word

    Posted on Friday December 11th, 2009 at 08:12 in life with gd23

    I was sent an email yesterday asking why I don’t post as many updates as I used to in the past.  On the surface, the reason is because there isn’t that much going on anymore in terms of doctors appointments, testing, etc.  We know what ...

  • Reality Checks

    Posted on Sunday December 6th, 2009 at 13:51 in life with gd23

    The medical supply company is coming out on Monday to switch out the big portable oxygen tanks with the more compact sizes that we can refill and carry on a backpack when we go out.  Thank goodness!  Honestly, I couldn’t see carrying around a...

  • Hannah’s ER visit – the aftermath

    Posted on Thursday December 3rd, 2009 at 23:03 in life with gd23

    Hannah's Oxygen concentrator We seemed to have entered a new phase in this journey.  I guess it was inevitable considering her diagnosis. After having a 45-minute visit with our pediatrician, we both agreed that we need to have some backup assis...

  • First ER visit for breath-holding spells

    Posted on Monday November 30th, 2009 at 23:07 in coping, life with gd23

    We made it 16 months without a hospital visit since Hannah was born.  Hannah had these hyperventilation episodes when she gets upset or frustrated.  It doesn’t happen often, although it seems to be happening a bit more now (mostly when we are...

Comments & Reviews

This blog is currently rated a 5.00 out of a possible 5 based on 2 comments.

JeansMommy

5 stars Jeans Mommy

Mary Helen,

Thank you so much! I'm not sure why the blog isn't coming up today. I definitely will let you know when the walk is -- we'd love to have you join us!

Carrie

Posted: March 1st, 2009 | More Reviews From JeansMommy | Report This Comment

5 stars Mary Helen

Hello, Little Miss Hannah and family! I am unable to log onto www.littlemisshannah.com, so I thought I'd email you here. I'd like to find out more about how my family and I can help, so please email me and let us know what we can do. Our oldest son was born at 2lbs. 2 oz. with a disorder they couldn't pinpoint at first, and we were told to take it "one day at a time." I hated that advice. That meant they didn't know if Sean would live or die, what he had, and what they could do to treat him if they found out. They did diagnose him, he's 23 years old now, ready to graduate from college, and healthy. I am praying the same for all of you.

Let us know what we can do. I've been reading about a Walk for Hannah, Awareness Day, and more. If you could give me some details (I know you're crazy-busy, so anything is fine), I'd appreciate it. Once I know what I'm talking about, I'll talk it up in our church and neighborhood.

Know you're loved and prayed for every day!

All our love and prayers,
Mary Helen

Posted: March 1st, 2009 | Report This Comment

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