World "Rare Disease Day"

The last day of February has been designated as World “Rare Disease Day” to call attention to the public health issues associated with rare diseases. The Project Charity — The Children’s Rare Disease Network has compiled some facts and figures about rare disease that we thought would be of interest. If you have other facts and figures not on our list, please send them to us. We are particularly interested in international facts on rare disease that do not seem to be available.

DID YOU KNOW… Approximately 7,000 rare disorders are known to exist and new ones are discovered each year

Rare disease affects between 25-30 million people in the United States and approximately 30 million people in the European Union

One in 10 Americans is living with a rare disease

Children represent the vast majority of those afflicted with rare disease

Approximately 80 percent of rare diseases are not acquired; they are inherited. They are caused by mutations or defects in genes

In the United States, rare diseases are defined as those affecting 200,000 or fewer people or about 1 per 1,000

Rare disease is often referred to as an “orphan” disease

Orphan or rare diseases are often not pursued by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them and because there are not enough patients to make research cost-effective

Research on rare diseases can often lead to advances in our understanding of common diseases such as cancer, heart disease, diabetes, stroke and other major health problems
As a whole, rare diseases represent a large medical challenge. Combine this with the lack of financial incentives to treat or cure rare diseases, and a serious public health issue is created

The US Orphan Drug Act (ODA) of 1983 has been one of the most successful pieces of health related legislation ever enacted in the United States. Through a system of tax credits, government grants, assistance for clinical research, as well as seven years marketing exclusivity, the Orphan Drug Act has resulted in hundreds of approved orphan medicines, treating over millions of patients worldwide. Similar legislation has been adopted in Japan, Australia and the UK

SA Living

Today we got some great news! Thanks to Delaine Mathieu, who did our piece on WOAI 4, we will now be guests on SA Living sometime next week. That's huge! I'll let you know when we find out more details.

Please keep emailing Grey's committee members. What I wouldn't have given to see the tidal wave of emails they received this morning when they checked their mail!

I know we're making Grey so proud. For that, I can't thank you guys enough.

Greyson's Law, HB 1795

Greyson's Law, HB 1795

Below is the link to the committee members that need to support Grey's bill. Please email as many as possible, as soon as possible. Make sure to include Grey's House Bill number HB 1795.
http://www.house.state.tx.us/committees/list81/034.htm

The following link is the actual bill:
http://www.legis.state.tx.us/BillLookup/History.aspx?LegSess=81R&Bill=HB1795

Please feel free to forward this on to anyone and everyone.

In Less Than A Year

I keep up with a lot of other Krabbes families, through their blogs. I find a lot of reflection. "A year ago today . . .", "Last Christmas we were . . .". All day, no matter what I did, I just could not help put myself in those places. There I was.

A year ago today, we were a happy, oblivious family with our new colorful baby boy, not yet 3 months old. He was sleeping through the night. We were feeding him cereal. We were having family outings, no longer really afraid of the RSV season. We were bringing him up to school to show off. We were taking him to his Nana's and his Aunt Larissa's. We were entranced by his personality. He had a milk allergy, but which of our kids didn't?

Eight months ago, we were a little concerned that he wasn't holding his bottle. He was rolling over and cooing. He was laughing and kicking. He was shaking his head no. He was just "a lazy baby".

Six months ago, we moved up his 9 month check-up. Now 8 months old, he had stopped rolling over but he was still giving five. He still laughed hysterically and slept through the night. He was feeding himself and sitting up in his highchair. But his head control was getting worse, and it tilted to one side. We were told to go have some tests run, right away.

A week later, blood test results indicated maybe CP. A week later, we were at a neurologist. "I see babies like Grey grow to walk in and out of my office all the time." "He's so personable." "I'm not sure what he has, but I know he doesn't have CP." He was saying Dada.

Five months ago he had his first MRI. It was clear. He had a muscle and nerve biopsy. They looked fine. He had a nerve conduction test. His nerves didn't work. But, he was still an extremely happy baby.

Four months ago another visit to the neurologist turned into a night's stay at the hospital due to a "failure to thrive". He had his second MRI, a spinal tap, a swallow test. We have picture of him at the hospital, smiling with an IV in his arm. We took him home the next day, October 31st, and took him trick-or-treating that evening. He was a giraffe and loved every minute of it.

"He has deterioration in the white matter in the brain." "In hindsight," said the tech, "had we'd been looking for it, we would have seen it in the first MRI." We went to our November appointment with our neurologist, not yet having all our results back from the spinal tap. We made our December appointment. We were told that we had to make some tough decisions.

The day before Thanksgiving we were told that we were no longer looking for something treatable. We were looking what to call "it".

We went to our December appointment, December the fourth. We were told, "I'm so sorry. It progressed quicker than I have ever seen. I never thought we couldn't fix him." We were told that he may not see his first birthday, only two weeks away. We were told to call Hospice. They arrived at our house later that day. Our neighbor witnessed as we signed his DNR order.

Six days later he took his last bath, laughed at his daddy and gave him kisses.

Two days later, Grey died.

A week later we had his memorial, December 20th.

On December 31st, his autopsy revealed Krabbes.

It was that quick. Too quick to even diagnose.

It feels like forever ago, but it has only been two months, one week and five days.

All in less than a year.

Take Me Out To The Ball Game

Today marked the first day of Little League, with Seth having his first practice. When I got the call at 3:00 to let us know that practice was today at 5:00, I could have been irritated. But I wasn't. I was relieved. It would get me out of the house, and the mood, I was in.

Pulling into the fields I couldn't help but think about the miserable season we had last year. Seth hardly ever played. Practices were a chore. Parents on the team were strangers. I often chose to stay home during the games, with a yet undiagnosed Grey, who never seemed to enjoy his time in the bleachers. This even put a strain on Bill and I. I love Little League season, but this season was full of disappointments. How dare his sun not shine. It was a dark time.

But this season will be different. Two of my most caring friends met me at the field. One is Seth's coach. The other is his wife. You know how sometimes there are just people you connect with, even though you don't get to spend nearly the time with them that you would like? You just feel it. This would be them. Before Grey's death, it had been nearly a year since I had seen them. But when we needed them the most, there they were, at both Grey's memorial and benefit, with open arms, out of the blue.

So this afternoon, I ended up sitting in the sun, with my friends. I was able to talk, and listen, about Grey. But I was also able to forget about Grey's loss for a bit. I watched Seth play and laugh. I watched Ry enjoy time simply playing with ants and a stick while his brother practiced. Once again, life goes on. Sometimes, because of friends, it's just a little bit easier than others.

Hey Coach, make sure you check the pony this week. More DMB is one the way. I love you guys.

Forever Grey's Mom,

Nicole

www.huntershope.org

Please check out www.huntershope.org. Their support has been incredible! Grey's Bill will have a HB number by Friday. If passed, it will be named Greyson's Law.

Please spread the word to anybody and everybody. Names and numbers to support his Bill are on their site.

Yellow

Dear Grey Grey,

I love this song that's playing, "Yellow". It just reminds me of you.

Look at the stars
Look how they shine for you
And everything you do
They were all yellow
You came along
I wrote a song for you
And all the things you do
And it was called yellow
Your skin, your skin and bones
Turned in to something beautiful
You know, you know I love you so
You know I love you so

It's true the colors shine for you

The colors shine for you

You've always been my star. I feel closer to you, outside looking up at the sky. You shine so bright Little Man. You always will.

I can't believe you're gone. I'll think of you every time I look at my wrist. It's the best I could do, though it doesn't compare.

Love,
Forever Your Mom

How lucky?

Dearest Grey,

The further we get with your legislation to expand newborn screening, the more I believe that you really were brought here, and given to us, to get this accomplished. Although many have worked really hard to make this happen, it just all seems to be falling into place too easily. There are just too many coincidences for this not to have been your purpose. I really do believe that no matter what I could have done, you were not meant to be here with me forever. You were just on loan, a vessel to accomplish something much bigger. How lucky am I to be given the opportunity to have been your mom?

How lucky am I to be surrounded by people who understand the politics of this process? How lucky am I to be given the ability to give people your face with this disease, and it's lack of screening? How lucky am I that I gave you those eyes and that smile that has entranced so many to believe in your cause? How lucky am I that I can wake up every morning and know that my family at work will get me through yet another day without you? How lucky am I that your daddy and brothers will pick up their slack when I get home? How lucky am I that I have friends that can still make me laugh? How lucky am I that Hunter's Hope has embraced us? How lucky, that through your loss, you give me the strength, not only to continue breathing, but to fight for everything you stood for?

I know at times, I don't feel so lucky. At times I miss you so badly I wonder how I will walk through this world for years to come without you. At times, my chest burns with the anger of your loss.

But, how lucky am I to have been your mom for 11 months, 3 weeks, and 1 day? Nobody but me can claim that.

Love,

Forever Your Mom

P.S. Ry wants to tell you something:

Grey,

I know you love animals so I typed this word for you all by myself.

zoo

I miss you Greyson.

Riley

You Alone

The chances of Bill and I being recessive carriers for two totally unrelated disorders is in the billions. After it affects one of your children, you could question your relationship. After it takes another . . . Well, I could figure we were never supposed to be together, or we (along with our boys and Greyson's loss) were meant to change the world. After 12 years, I'd opt, with Bill and Bill alone, to change the world. I'd do it all over if only for the 11 months, 3 weeks, and 1 day.

Bill,

I love you Honey. I could never make it through something like this if I were not going through it with you. I may tease you, nag you, get frustrated with you. But the truth is, you are the one person that rushes in to mend my heart as it continues to break, over and over again. Through Greyson's loss, I only love you more. Happy Anniversary. Who would of thought 12 years ago we would be here. But at least we're here together.

Forever Your Wife,

Nicole

Consumed

Dear Grey,

This has been the first weekend that I have not been totally consumed by your loss. Before I knew it I was outside playing Frisbee with Ry and singing to an old Merle Haggard song.

I don't know if I should be relieved by that, or feel guilty. I know you wouldn't want me to feel guilty, and I'm working hard not to. I'd like to think that you know that Riley is the one that I respond to the most. That you use him to make me laugh, to get me moving. I'd like to think that you were in the driveway with us, enjoying our game. I wonder if you're using him to try to mend the hole in my heart.

Tomorrow it will be me and your dad's 12th wedding anniversary. I almost feel as though I could celebrate. Through your loss I've learned to love so much harder.

I love you Grey. And although I miss you terribly, I feel like I am beginning to learn how to function again. For that, I love you even more.

Love,

Forever Your Mom

Jim Kelly On The Sean Hannity Show

Jim Kelly will be talking about the importance of Universal Newborn Screening on Fox New's The Sean Hannity Show on Feb. 16th at 9:00 PM ET.

http://www.huntershope.org/Hannity.pdf

Hunter's Hope has been extremely active in helping us try to get Texas' Newborn Screening expanded. They are incredible people. I cannot thank them enough. Please take a few minutes to tune in.

In Memory

Two Months

I know the quality of this picture is not great, but it really does show Grey's spirit. It was taken during our stay at the hospital. In one arm is his IV. In the other is Oatmeal. His smile, those eyes . . . amazing.


Two months . . . Wow! It seems like forever since I've run my fingers through his hair, kissed his little fingers, felt his touch on my cheeks. If two months feels like forever, what is two years going to feel like?





Today I have lived 12/12/08 over and over in my mind . . . the orange color of his lips from the Gatorade, the limpness of his body as I held him, the medicine on his breathe, the lavender baby lotion Syndi put on him after he had passed. I see the Suburban pulling in our driveway, the white sheet, the license plate as he was taken away. The emptiness and sadness of that day could never be put into words.





Two months, and the emptiness feels just as big, if not bigger.





There's an emptiness inside her
And she'd do anything to fill it in
But all the colors mix together
To Grey . . . and it breaks her heart





Little Man,
Everything about you was perfect. Everything about you, even your disease, is what made you you. I know that your time here was limited, that no matter what I did, you could not have stayed one second longer. You were part of a bigger plan, a plan that unfolds before my very eyes more and more every day. You were chosen to impact this world, and I was lucky enough to be chosen to be your mom. Even in your loss, I am truly grateful for that.
Love,
Forever Your Mom

Sometimes

Sometimes I feel like a dam that is about to break. Like someone, anyone, could just barely touch me, and the crack would rip through my body releasing two months of agony.

Sometimes I feel like a small child bracing myself for the oncoming wave, too tired to jump into it and let it rush around me.

I have never been one to build a wall around me. With walls no one sees in, no on sees out. I see everything, and those who know me best see everything too. Maybe I'm in one of those stretchy bubbles you see in a cartoon. I can reach out to touch you, but for now there is a barrier that I have placed between us. You could reach into me, and I would dodge you, like a kid playing tag.

Sometimes I feel like I walk around all day, numb in this bubble, just waiting for something or someone to pop it. Then what would I do?

Sometimes the emotions I am feeling are just so out of whack. Be it good, or bad, everything is intensified a bazillion times. When I allow myself to be sad, or mad, the dam breaks. Even when I am happy, the speed of hitting the wall afterwards is nearly too much to bare.

I have always been an extremely loving, touchy person. But lately, I feel myself tense as some people approach me, bracing myself for the wave. I feel myself tense as those who I need to touch me approach, knowing that if I give into their touch, I'll break. It's a lose/lose situation.

Tomorrow will be two months since Grey took his last breathe. It as been two months that I have been gasping for air inside my bubble. I don't know which is worse, feeling like I can't breath, or letting my bubble pop.

I Wonder

I wonder, if when you look at me, you see anything but Grey.

Muddling Through

This weekend was a rough weekend. I tried to fill it with productive tasks. I got a couple videos made to help bring awareness to Grey's story. I took the boys to Little League tryouts. We had a couple movie nights. Madagascar 2 was funny. Gloria the Hippo cracks me up. My life would be so much easier if I was Gloria the Hippo. She loves the fact that she's chunky, and so does her boyfriend.

After the boys went to sleep I went into Grey's room, and ended up spending most of the night in there. I just couldn't get close enough to him. I found myself holding on to his blankets and stuffed animals, rubbing my hands on his bouncy seat and swing. I was angry that everything he had touched I had washed. I took his hair from his first haircut out of it's pouch just to feel a little something that was left of him, still so silky. I opened his drawers, still looking for some article of clothing that I'm willing to part with in order for Hospice to include it in their quilt. There are clothes in there that Grey never even got the chance to wear. I opened his diaper bag, not realizing that it had not yet been unpacked. In it I found his tennis shoes and a couple outfits that he wore the most, along with a hospital bracelet dated 12/5/08.

I just don't know how I'll ever be the same. I think about people I will meet, and how they will never know the person I was before Grey's loss. I really did like that person. I think about my friends and wonder if they ever see a glimpse of the old me. I think about my family and wonder if we will ever be the happy family we were a year ago. I think about my husband and wonder if I will ever be able to hold the pieces of my heart together long enough to show him that he is still undoubtedly the man I am supposed to spend the rest of my life with. I think about me and wonder if I will ever not feel Grey's loss with every single breathe I take, if my laugh will ever be sincere, or if my eyes will ever sparkle with excitement again. I just don't know.

I consistently hear stories of how Grey's short life has changed people for the better, made them better parents, made them better people. I don't know that as of yet I can say that the same holds true for me. Am I a better mom because of Grey? Absolutely. Am I a better wife, daughter, sister, and friend? Yes. But am I able to show it? Not yet, not until I muddle through this pain. But I know I'll get there. I just ask that you be patient with me until I do.

YouTube

Dear Grey Grey,

I put together two videos of you and posted them to YouTube today. It took me forever. I thought if I stayed busy enough, I wouldn't miss you as much. I was wrong.

But, you can search "Greyson Morris Krabbes" and these will come up. Who would have ever thought you'd be on YouTube? Crazy.

http://www.youtube.com/watch?v=a7usH3QQZzg Grey's Gift

http://www.youtube.com/watch?v=RavCN5knWnM Who Knew?

Love,
Forever Your Mom

Who Knew?

This is my first attempt at putting together a video to help us bring awareness to newborn screening. Please let me know what you think. Remember to go down to my playlist and turn it off.

In Thought

Dearest Grey,

My head spins as I meet with, I don't even know who I'm meeting with . . . representatives, legislators, chiefs-of-staff. I listen to huge words and policies that I don't understand. I really should have paid more attention in my government class.

Oh Baby, I'm really trying not to be intimidated. I'm really trying to make you proud. I'm really trying to ensure that no baby, or baby's family, has to go through what we did. And then I stop to think.

Can I even believe that I am having to do this? It's not often that I stop and really let myself think of your loss. A little moment here, a little moment there. But always interrupted by the fear that if I do really think about your loss, I'll just lose myself within the deep hole in my heart.

Every night before I go to bed I walk into your room and just inhale. I touch your sheet and Oatmeal. I kiss your urn and then turn off the light that illuminates your picture with your footprint. I go to sleep with the TV on to occupy my mind until I drift off. You're the last thought I have at night, the first thought as I wake in the morning. But you are never in my dreams. For if we met there, I don't know that I would ever want to wake up. I know that you know, and I understand. I'm just not ready yet.

Love,
Forever Your Mom

HeyDad

My husband started a blog. It's from a dad's perspective and it's amazing!

Check it out: http://heydads-blog.blogspot.com/

Hope

Dearest Grey,

Hunter's Hope . . . hope . . . Two more gifts you have given me through your loss. They melted as they saw your bright eyes and beaming smile. But who doesn't? Together, we're going to make a difference. I strive, every day Grey, to make you as proud of me as I am of you. Today, I think I got close.

I love you as much as I miss you.

Big Wet Kisses,

Forever Your Mom

Mary?

I guess I have reached the angry stage in my grieving, and I must tell you my friends are very glad to see this, even though it means seeing me angry. I've told you, I have the best friends.

This is how I realized where I really was in these phases of grief. I was reading an interview and the lady was asked that if she could be any historical figure for one day, who would she be. She answered Mary.

My immediate thought was, "Why in the world would anyone want to be Mary?" Obviously, she must not have experienced what it was like to watch her child suffer and ultimately be taken away from her. I remember watching The Passion Of The Christ years ago and just sobbing as Mary watched Jesus stumble by, cross on his back. To me, it was the worst part of the whole movie. As a mother, I just ached for her. Now, I share her experience of having her son sacrificed for a bigger cause. The ache is even more real.

But as I sat with my friends and talked my way through the anger of a stranger's answer, I realized that Jesus's death was only one day of 33 years of his life. That means that there were 12,044 other days in which he performed great miracles and deeds, all benefiting others. Do I really think that Mary would have given up all those days just so that she didn't have to have her heart broken on the 12,045th day?

And I realized that in Grey's short time here on Earth, a mere 359 days, never was there a day that I didn't absolutely love being his mom. Never, in 359 days, was I not proud of him. And never would I have given up 358 days in order to not have my heart broken on the 359th day. Outside of his broken body, Grey was born a perfect angel. His eyes beamed with love and acceptance, even towards strangers. His smile melted even the coldest hearts. His kisses opened your weary soul. Never has anyone given me unconditional love and acceptance as Grey did.

And I realized, that as angry as I may be, this too is just a stage. Grey has given me a gift that some mom's will never receive. And for that, I would relive that 359th day over and over again, as I so commonly do. Grey has showed me how to love, even through his huge loss. He's showed me that it's OK to still enjoy things, because that's how he lived his live. Right now he's showing me, that as I sit here and cry as I type, it's OK to stop crying so that I can enjoy Bruce singing "Working On A Dream" at the Super Bowl.

I love you, Little Man. You make me so proud.