Giving a voice to those who don't have one!

I have found my cause. Other than being a mom, I have decided that I am going to spend the rest of my days on a cause close to my heart, Histiocytosis. It is the disease that Sophie is dealing with (hers is Langerhans Cell Histiocytosis [LCH]), and I plan on fighting for funding to support the doctors and scientists performing research on this disorder.

As many of you know, I know what it's like to fight along side a baby that doesn't/can't have a voice to speak for themselves after what my son went through when he was born very early. I have lived with "visiting hours" and went home postpartum and left my baby in the NICU for 32 days after delivery. I then monitored him at home, praying by his side day in and day out to heal, but in our case there was some certainty that he would get better. I know what it's like to have a child who can't be their own advocate.

A person with Histiocytosis does not have that certainty. There is NO guarantee, and in fact, in many cases, the prognosis is VERY poor. That is why I am so passionate about helping the individuals who are suffering from Histiocytosis and are either unable to, or are too sick to speak for themselves. My daughter's prognosis is good thus far and I want to help. I want to tell the WORLD about Histiocytosis so that infants (who are typically the most at risk), children and adults do not have to suffer at the hands of these diseases anymore. Research funding is desperately needed and I plan on contacting every media outlet I can reach about this to get more publicity and then possibly more funding for these orphan diseases.

I wrote an article and forwarded it to all the major news outlets locally and in the Houston area to try and raise awareness. I pray that someone takes hold of the story of Histiocytosis and is willing to give it wings. I will certainly do my part. (www.histio.org)

On another note, I am so excited, I got Selena Gomez tickets for this weekend for Sophie. She and my niece absolutely LOVE her, so it will be great for them to have the opportunity to see her live and in person. The tickets are not in the nosebleed section either, they're at the "club" level in the VIP section, so I am sure the girls will enjoy themselves. I am praying that Sophie is rested up well enough to go. She's been so very tired lately, and has had headache and a temp virtually every day. I am sure adrenaline will kick in and she will put on a smile! I will be sure to take pictures!

Also, I got first aid and CPR trained at the office the other day. The guy who trained us was so funny, it was like Comedy CPR training. I know how to give CPR (I knew already, but this was a good refresher course) and I also learned a lot about defibrillators which I didn't have a clue how to use before. I am glad too, because with two kids with medical issues, you can never be too careful.

I may not post tomorrow. Have a great weekend everyone!!!

But, please email me if you have ideas on how to get the word out about Histiocytosis, please please please let me know.

Goodnight friends,
J