Kids Stuff World

Reaching out to families affected by Neurofibromatosis (NF)

Stacy — Sat, 18 May 2013 02:16:52 +0000

Today is World NF Awareness Day.

A day you’ve probably never even heard about, a day the Blazier’s wish everyone knew more about. I urge you to take a few moments today to read this story, a story by an incredible family I am honored to call my friends, my family, my military family. Even if you have never heard of NF or met anyone who has it, please share this story. I would love to help Jordan connect with others also diagnosed with Neurofibromatosis, he’s waited more than 12 years already. Let’s fix that today.

May is NF awareness month

What is NF? Neurofibromatosis (NF) encompasses a set of distinct genetic disorders causing tumors to grow along various types of nerves.

In addition, NF can affect the development of non-nervous tissues such as bones & skin. NF causes tumors to grow anywhere on or in the body. There are several different types of NF & manifestations differ from person to person. From Café-au-lait spots, the most common sign of NF, to Neurofibroma tumors which vary in size and composition, each person carries their own unique symptoms. Roughly 100,000 people in the U.S. have been diagnosed with some form of NF, yet there is no cure & few treatment options available.

Meet the Blaziers

My name is Jennifer, I am the parent to an amazing 13 year old boy, named Jordan, who was diagnosed with NF1 on his 1st birthday. Jordan is like many other teens. He enjoys playing sports, hanging out with his friends, driving his younger sister crazy, hates cleaning his room and has a zest for life that many adults would love to recapture. But, unlike other kids his age, Jordan feels comfortable in hospitals & around doctors because he has spent his entire life being followed and cared for by numerous specialists who monitor his tumor(s) growth and other clinical manifestations.

Jordan’s most recent development and complication has been the growth of an inoperable Astrocytoma brain tumor. Although considered to be a rare tumor, pediatric astrocytoma tumors are considered to be common among NF1 patients; as they are considered to be tumors of the central nervous system. The number of tumor growths and type vary widely among affected individuals from only a few to thousands. Presently, there is no way to predict how many persons will develop NF, how many tumors they may grow or how their specific symptoms will affect them. Therefore, regular checkups and MRI scans are the preferred diagnostic tools to monitor tumor growth. Tumor removal is risky and not always an option (as in Jordan’s case); typically, NF tumors grow along the patient’s nerve ending that originate somewhere along the central nervous system. Complete tumor removal requires the skills of a surgeon who specializes in tumor extractions that remove the tumor; yet, not disturb any affected nerves, which often times could result in paralysis of the affected area.

I am not sure if there are any words in the English dictionary that would adequately convey what it is like to be a parent of a child who has a condition that science has yet to discover a cure for. Yet, at the same time and through all of this craziness, we feel blessed as Jordan’s parents! We give thanks and praise God for choosing us to be Jordan’s parents. We are thankful for the amazing team of physicians that surround us & guide us along this journey. We are appreciative for having the opportunity to watch and learn from our amazing son; who continues to be our teacher almost daily. Most of all, we are thankful that Jordan continues to live and fights the fight. At 13 years of age, he still has much to learn. Yet, at the same time, Jordan has so much to offer this amazing world we live in. As parents, there is not a day that I do not stand in his shadows in awe of his personal courage, his resilience and his zest for life. Since the day we first heard the words and learned of Neurofibromatosis, as Jordan’s parents, we vowed to never allow his medical condition to define him or limit all that he could become. It is for this reason, I honor my son’s wishes today, by sharing Jordan’s story, in hope of giving back to others by bringing awareness to the NF community.

The Children’s Tumor Foundation is the leading foundation for Neurofibromatosis 1; whose mission is to educate, advocate and bring awareness about this medical disorder to one community at a time. Finding cures and treatment options starts with the understanding that an issue exists. A patient registry was initiated in 2012. One of the purposes for the registry is to bring NF families together so they can: gather a more accurate picture of of how NF has affected each individual who has been diagnosed, networking, research studies, etc. Knowledge is important and becomes the power needed for the building blocks to finding a cure.

We are asking any individual diagnosed with NF1 to register at nfregistry.org .

Your confidential information will be used by researchers to help find treatment options and ultimately a cure. To find out more about NF please visit ctf.org which houses a vast variety of information about this diagnosis, the foundation, ongoing research and volunteer opportunities to those who wish to help bring awareness into their Community.

Thank you for taking the time to read a little about our story. Hopefully we have inspired you to help spread awareness about NF and encourage those affected to register at nfregistry.org.

Again, thank you and God Bless.

The Blazier Family

Spring Apron Giveaway from She & Me Designs

Stacy — Tue, 07 May 2013 04:08:54 +0000

I’ve got a sweet surprise for you today! We’re taking part in the Sew,Mama,Sew! Giveaway Day this year and just look at this adorable spring apron we’re offering up. It is just too much cuteness, and just one of the sweet aprons you can find on my mother-in-law’s etsy shop, She & Me Designs. There’s a lot more cool kid stuff over there too!

To enter to win, all you have to do is leave a comment telling us who you would give this apron to (apron is size 5/6)

You can earn one extra entry for following She & Me Designs on Facebook
and one for following Kids Stuff World on Facebook

For a total of 3 entries, just let me know in the comments if you like either or both of the pages.

Giveaway ends May 10 at 5 p.m. PST. We will ship internationally if necessary.
Click here to see the great items being offered up during the Sew Mama Sew Giveaway Day

Letter to a New Mom

Stacy — Mon, 06 May 2013 05:51:44 +0000

I’m not exactly sure where you will be on your journey into motherhood when this letter finds you — your child may be one week old, or a month old or maybe even coming up close on a year. Whatever the case, by now I am sure you have realized,
life as you know it has changed forever.

Suddenly, you are responsible for raising this little person who will someday grow up to be a big person and leave their imprint on the world — their imprint, a direct correlation to the way you have shaped their hearts.

No pressure.

In exchange for this weight-of-the-world task at hand, you will be smothered in hugs and sticky kisses and covered in all sorts of grossness you’d probably rather not know about right now. It’s a dirty job, that’s for sure, but someone has got to do it.

Tip: You may want to pack away all your white clothing for at least a couple of years …

And someone up above has chosen you to be that person.

It’s awe-inspiring no matter how you look at it. It will keep you up at night and cause you to wake far too early in the morning and sometimes rob you of your sleep all together.

Tip: Whenever possible, go to bed by 11pm. Promise you’ll be a better Mom the next day because of it!

Some days the tasks will seem insurmountable, but on other days … you’ll feel basked in love and glow from the precious thought of it all.

You are part of the tribe now, there are women everywhere who can take just one look at you and know, truly know, where you are and where you are going. In only a few short years, you will cast those same longing glances at moments gone by and stop whatever you are doing to lend a helping hand to a new mother in need yourself. You will do it all because you know, because you remember and because you would give just about anything to do every single moment all over again.

Tip: If you’re out and about and need help, seek out that Mom with the friendly smile and knowing eyes.

I’ve been a mother now for seven years, and perhaps I am the exception? (but I doubt it), but I still have no clue what I’m doing. I’m doing it all for the third time, yet each morning is completely new and every situation, it seems, totally different from the last. I don’t think this is a gig I will ever feel completely prepared for, yet I have learned in these past 2,600 some odd days there is no one else in the world more qualified to raise these three particular children than me.

Tip: Your kids think you are the greatest Mom who ever lived. Guess what? You are.

If I could give you any advice at all, it would be to hold them as close as you can for as long as you can. I assure you there is nothing going on anywhere right now that is more important than this child — than that warm embrace or that gummy smile, those tiny toes, that button nose.

Tip: If you haven’t started playing photographer yet, DO! Document those chubby cheeks and smooshy thighs and every other little bit as often as you can. Try cropping some photos to just highlight those sweet little baby parts and then take a peek at them in black and white — ADORABLE!!

The rest of the world will wait, and will hardly even notice you were gone from the thick of it … but those moments you can spend building that bond and nourishing that soul outweigh any other accomplishment you will ever achieve. This is your biggest moment, this is your greatest gift! Embrace it all while you can, they will be as tall as you are before you know it.

Seriously, time speeds up the moment you become a Mom, I am sure of it.
Image found on Shabby Creek Cottage via Sally Graves Art

This Sunday, I will be thinking of all of you and reflecting on each of those last 2,600 some odd days of my own story and praying I make the most of the rest of them.

This post was part of a series about Motherhood started by Inspired by Family.
If you are a blogger and you have a story or something to share on how you celebrated motherhood, feel free to add a link to your post so we can read your story as well.