bribery…to help Emma

Hey Everyone!  I do have some freebies for you, but if you wouldn’t mind, please read this before you jump to the end to snag them.  I’m kind of using them as bribery this time.  I’m hoping to enlist your help in something that will only take about ten seconds of your time (not asking for money, so no worries!), and it will mean so much to us and many other families.

OUR STORY
It’s just after 1am in the morning.  It’s taken me WAY longer to get this all put together than I thought!  So, I apologize if this isn’t very coherent (not like it’d be any different than my usual self…hehe).  And, I’ll try to keep it as short and to the point as I can.

I’d like to introduce you to our little girl, Emma.  She’s my oldest daughter (8 yrs) and has a unique story to share and a purpose in sharing it right now. 

 

When Emma was born, we soon discovered that she was a very special little girl.  She had to fight from the beginning to survive.  She had open heart surgery when she was a few days old to repair a major heart defect (TAPVR)…

As some of you probably can relate from your own personal experiences with a sick child, it was a very terrifying experience.  Thankfully she healed quickly.  It seemed like everything was moving along well, soon it would all be in the past, and we’d be able to move along in our new lives with our new beautiful baby girl.

But that wasn’t to be…

When Emma was eleven days old, just six days post-heart surgery, she was diagnosed with a really rare, fatal disease called Fanconi Anemia (FA).  It causes aplastic anemia (bone marrow failure), leukemia, and different types of cancers. 

It was a devastating diagnosis. 

We’d never heard of it before.  Turns out there are only about 300 cases in the USA and 3000 in the world.  It’s incredibly rare.  We almost always know more about it than doctors do, not the most exciting position to be in.  It’s a double recessive gene, so both my husband and I carry it and now have a 25% chance in having another with it.

Due to FA, she also has hypothyroidism, only one kidney, very small stature (at 8.5 years old, she weights 37 lbs and is about as tall as a 5-6 year old), hearing impairment, and some other issues.  FA presents itself differently in all children.  Some have very few abnormalities, and some have several.

She had a cleft of the soft palate that repaired when she was three (see pic below).  Poor baby did not have a good experience.

Since FA causes bone marrow failure, Emma has had to have her blood levels checked regularly, at least every three months since birth (usually every 1-2 months due to her thyroid issues).  We’ve watched her blood counts slowly decline over the past several years. It’s a hard thing to see.

Here she is with her (then) two year old brother as she is about to get her blood taken (she hates it).  He is the sweetest little guy and put his arm around her and kept telling her it was okay.  He seems beyond his years in his understanding and compassion.  They have such a special relationship.

She also has to have a bone marrow biopsy at least once a year, sometimes more, depending on results.  This checks for cancers and bone marrow status.  As of right now, only about 10-15% of her bone marrow makes blood.  At her age, it should be about 92%.

Here she is about to have one.  They put her to sleep for it…thank goodness!  It’s not a fun thing to watch, but we always stay with her because it makes her feel safe.

As of about 18 months ago, she fell into severe bone marrow failure ranges and required red blood and platelet transfusions for about four months.  As she started her first blood transfusion, we also started her on androgens in hopes of it boosting her bone marrows ability to make blood.

Here she is having a blood transfusion.  She likes to make faces at the camera.

After each transfusion, she’d go home and run around really fast.  She’d tell us how fast she could run now that she had enough blood.  She told us that before the blood, she could only run really slow, which was true.  And, when it got really bad, she could hardly walk to the bathroom and back.  She would get so out of breath and exhausted. 

It’s been heart breaking watching the disease progress. 

Finally, after four months, the medication boosted Emma’s bone marrow production of red blood cells high enough that she no longer needed transfusions.  Now she goes in at least every six weeks for blood work.  Her platelets are very low and her immune system is very weak.  Her red blood cells are doing pretty good!  They are low, but it’s nothing like it was.  The medicine is helping.

A bone marrow transplant is a treatment for the bone marrow failure.  In Emma’s case, a sibling donor is especially important.  We have had three more beautiful little children, and none of them are a match for Emma.  But, each one of them is healthy!  What a blessing.  We are currently pregnant with baby #5.  We’ll find out if she is a bone marrow match for Emma once she is born.  We’ll save the cordblood for her.  So far all testing shows that she is also a healthy little one.

Here are some pics of our little clan (it’s nearly impossible to get a normal shot.  They LOVE to make faces!)

But even after a bone marrow transplant, it doesn’t cure them of FA.  They have a crazy high risk of developing various types of cancers (especially reproductive and head/neck cancers).  Due to how FA works, they can’t radiate or do chemo like they can on non-FA people.  In the end, there is no cure for the cancer, and thus, no cure for FA.  It’s always fatal.

I’m nearing the part where I need you…

As I mentioned at the beginning, FA is very rare.  There is a research fund that is dedicated to finding a cure.  They’ve already done a tremendous amount of research and improved treatments.  Children are living longer now.  There are more successful bone marrow transplants.  But, still, way too many are dying young.  There needs to be more research, and we need more money for it.  There is no public awareness of it, so almost all incoming funds are from FA families holding fundraisers.

Now, you’re part…

There is a charity contest going on.  We need votes – no money – just a vote!  It really only takes about ten seconds.  We already won in the first phase, and our charity earned $25,000.  The current phase we need to place in position somewhere between 1 and 25.  Right now we’re in the 30’s.  I just looked, and we are SO CLOSE to getting in the top 25.  If we rank high enough, we could potentially get $500,000 for FA research, which we desperately need!  The contest ends on May 25th.  We don’t have a lot of time to get all these votes in.

Would you mind voting for us?  I haven’t had time to create a new kit (I’m so sorry!), but I went through some of my layouts I’d created in the past using my kits and have created some freebie quickpages for you.  It’s my bribe attempt to encourage those of you with Facebook accounts to vote and help us earn money to hopefully save my baby and other little ones with FA too. 

Obviously I’ll have no idea if you do or don’t, so it’s up to you.  

If you don’t have a FB account (which means you can’t vote), please feel free to download the quickpages still!  I’d love for you all to have them.

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VOTING:
If you’d like to vote, here’s what you can do:
- Go here: http://apps.facebook.com/chasecommunitygiving/charities/930995453-fanconi-anemia-research-fund-farf?src=vote_share

- You’ll need to “Like” Chase Community Giving (the company that is donating all the money to the charities – awesome group!).

- Then cast your vote for us.  You can only vote one time.  And no money donations can be accepted through them, so no worries about that!

- If you feel comfortable doing it, I’d love it if you could pass the link on to your family & friends!  The more the merrier!

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Also, I do keep a blog about our family and updates on Emma for those interested:
http://cliftonclan.blogspot.com

And, thank you so much for reading to the end!  I’m sorry it’s so long.  It really is summarized, I promise!  hehe.  For those who vote, thank you, thank you!

QUICKPAGES
I hope you enjoy the quickpages as my way of thanking you.  They are a bit of a mish mash.  I really wish I had a new kit to give to you!  I am working on it when I can.  Hopefully it won’t be too much longer.

If you’re new to my site, I’ve had to quite selling my designs.  I needed to put more focus on my family & knew I couldn’t keep up with the demands of creating/selling kits.  So, for now at least (and probably for a long time), I’ll be giving my stuff away for free.  I’m much slower than I was, but you can subscribe and be notified when I have something new out, if you’d like! 

For some reason the link on the preview below isn’t working.  So, I added another one HERE and at the very end of the entry.

CLOSE UPS:
Here are close-ups of the layouts I made to see what you’re getting in the QP pack:

Below:  This one got messed up last night in my delirium as I was working on these.  All the layers deleted (sob).  So, no psd file, but there is a png file.  At least I have the original full size jpg so I can print it off.  I can’t believe I did that!  Be sure to try using your eraser tool if you have any photos crossing over into places you don’t want:

You can download the QP from here:
http://www.mediafire.com/?z6fan51hu37aiwh

I haven’t used mediafire much before, so if any of you have any problems, let me know, and I’ll upload it to another site.

Thank you again!!
Teresa