Gracie steals the show!

As promised, here is the clip from the Minneapolis Fox news station where Gracie and her Dad and mouthpiece Mom had their cameo appearance alongside Kenechi Udeze, a Minnesota Vikings defensive end and fellow transplant recipient at the Celebration and Reunion.

If you keep watching, you can see Gracie flirting with one of our beloved doctors, Dr. Orchard, who heads up the Pediatric Inherited Metabolic Disorder division of the Blood and Marrow Transplant Program. He's a cool guy and Gracie always has lots of smiles for him.

Video Clip: Udeze's Mission

Read the news story: Kenechi Udeze Attends Benefit to Crusade for Bone Marrow, Blood Donors

Enjoy!

Register - National Bone Marrow Registry Program

Hey all. Just wanted to pass along some info about FREE registration for the Nation Bone Marrow Donor Program that I saw on Lauren's mom's yahoo site. http://groups.yahoo.com/group/laurenslife/

May 5th through the 19th The National Bone Marrow Registry Program is
letting people join the registry for FREE! Normally, they charge the
cost of processing your cheek swab (yes, that is all you have to do
besides some paperwork) to enter all of your info in the system.

Anyone in good health ages 18-60 is allowed to join the registry.

Here are some facts about joining the registry that you need to know:

When you sign up, you will be sent a packet that includes the
materials to swab your cheek and return with the appropriate
paperwork. The NMDP will take the items you send them and use them to
enter you into the registry.

Next... you wait. What are the chances you will be chosen? About the
same as winning the lottery. That's right, you may never get 'the
call'. However, if you do, you would have the chance to save the life
of another person... to be their hero.

If you are ever considered a 'match', you will have the chance to say
NO at any point in the process. If you stay a 'yes' then you will
have a physical done to make sure you are healthy and the other
person's doctor will decide what type of transplant s/he needs. Many
transplants these days are done from blood taken durring a Peripheral
Blood Stem Cell Donation. Some people will need to give actual marrow
which is taken under general anesthesia.

It would be so amazing to be able to save another life in honor of
the person who donated their cells to Lauren.

The registry is a great way to help other folks with life threatening illnesses like Gracie and Lauren, possibly giving them a second lease on life. As mentioned above, it requires only a cheek swab (no blood or needles) and a bit of paperwork, and it FREE from 5/5 to 5/19.

Question for Susan from Jacksonville

Susan, I saw that you live in Jax and have 2 children with hurler and come to U of MN. I'm so happy to hear that you've had great outcomes! Yay!!!

Sounds like we should definitely keep in contact, but I couldn't access your email address via Gracie's guestbook. Can you please email me at mgkelly@gmail.com so I can have Sarah contact you? I'd love to know where you go in N. FL for treatment and routine check-ups, etc. It would be great to tap into any resources with Hurler experience in N FL. Thanks!

As promised...

I mentioned earlier about an MPS/ML Forum I stumbled across in my early research. Although I have only made a few posts there, it has already become an invaluable resource for me. Basically, its a messageboard forum for parents, caretakers, and family members of children or adults with MPS. This site deals just as much with the emotional aspects of living with and battling these diseases as the clinical, so access is restricted to those directly involved with the disease. It is an extended family for those of us who face these hurdles and you know when you post there that these people know exactly what you're going through.

If you happen to find this blog while searching for information on Hurler Syndrome or MPS in any form, give this forum a try. You'll find a kind of support there that no one else can give you. You are not alone in this. There is hope and fellowship in community.

http://www.mpsforum.com/