Friday, April 26, 2013

Regional Director of Massachusetts

It is official I am the Regional Dicrtor of the Massachusetts Rare Disease Community chapter of the Rare Disease United Foundation.  We are a non-disease specific not-for-profit organization. Our mission is to build a strong rare disease community in Massachusetts, to provide support and information to our families, to raise awareness and to advocate for our families.

If you are interested in more information leave me a comment and I will get back to you.  At this time I do not have an email for the foundation set up because our website is under construction.

My favorite thing about being a part of this group is that we are non-disease specific.  There are so many organizations for specific disease while there are 100 of more diseases out there.  We all have the similar struggles, hopes and dreams and just because our disease are different doesn't mean we can't help each other.

We look forward to working on behalf the the rare disease community in Massachusetts. Thank you!!

Monday, April 22, 2013


I am so excited to be a part of this wonderful organization.  I cannot wait to get started.  We are mothers, fathers, grandparents, guardians, doctors and patients looking to make a difference in the rare disease community.  We are a non disease specific not-for-profit organization that started in Rhode Island, is moving into Massachusetts and will soon be all over New England.

Check us out on facebook or at the Rhode Island Rare Disease Foundation website, which is under construction at the moment.

If you are interested in support groups, fundraising or if you have any questions please contact me at

Monday, April 15, 2013

I love someone who is RARE. Do you?

Did you know that there are over 7,000 Rare Diseases and new ones are discovered all the time. 

RARE is Everywhere and I want to spread the word about supporting RARE because even though alone we are RARE together we are STRONG and sometimes I just need the stregnth of others.  You may not even realize that you know someone who is RARE, but I bet you do.

Rare and genetic diseases affect 1 in 10 Americans, 30 million people in the United States, and 300 million people globally.  Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes.  The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases on of the mst deadly and debilitating for children worldwide.

While at Lobby Day we were shown the Global Genes Project video that is below.  It does a wonderful job of showing how important staying connected is and how you really aren't ALONE.

When it is your child that you watch suvering day after day you want to stand up and shout at the world, hey listen to me.  Well today I am shouting..if you are listening and want to help spread the word contact me.  Maybe you can help figure out what is wrong with my child and if not mine maybe someone elses.

Saturday, April 13, 2013

Soccer, Soccer, Soccer

Soccer games for the spring season started today and I love soccer season.  We see friends we haven't seen in months and I love watching the kids play.  They have played on travel soccer teams since they were little and it is so nice to see them still playing with the same kids years later.

Devon's team was in Division 1 last season and they did not have a great season.  They didn't win a game all season and started fighting a lot.  Since Devon played goalie for most of the season he was very frustrated and almost did come back.  We encouraged him to play with his team because it is their last season together and they got moved back to Division 2.  Well they played great today, worked together and ended up with a 5-1 win.  It was awesome to see them working together as a team again and having a great time doing it.

Jordan's team played Division 1 last season and while they didn't win a lot of games they held their own and are back in Division 1.  Jordan's team has played together since they were 5 years old and I am always in awe of how well they play together.  Unlike the boys they never give up and usually dominate the field.  Even if they don't win, which today they did not, they still give it their all.

Today was hard because it was the first game of the season and Jordan was very nervous.  Then the game became very intense and she ended up not playing at all.  It is hard to watch all her friends playing and she ends up crying on the way home.  Her coach is great and usually plays her even if it is a few minutes.  I think sometimes she gets caught up in the game and knows that Jordan doesn't always want to play.  It is that fine balancing act between trying to win and playing everyone.  When Jordan first got sick she didn't mind only playing 5 minutes a game, now it is starting to bother her a little.  The good thing is her coach usually makes up for it in another game.

It's just another part of life that we have to watch our children go through.  They aren't always going to be the best at everything and sometimes you just don't get to play the game.  Doesn't mean you sit down and become defeated by it, it means you get back up and try twice as hard.

Friday, April 12, 2013

First Dance

Jordan has her first dance tonight.  I am looking forward to listening to her and her friends get ready before the dance.  I cannot believe that she is growing up so fast and I am so happy that she is able to experience these wonderful times being a kid.

She had to grow up so fast because of all the illness she has experienced and we expect so much from her that I love being able to sit back and just watch her.  She has developed into such a beautiful young lady and I am looking forward to many more years of dances.

Thursday, April 11, 2013

New York Skyline

We spent this past weekend with my whole family. It was such a fun time being with everyone and watching my brother and his fiance get married. They looked so happy and it was such a special night. I enjoyed seeing family and friends that I haven’t seen in a while and catching up with everyone.

I was a little nervous because I knew it would be a long weekend with lots of action and late nights. I didn’t want Jordan to over do it and I was glad when on Friday night she decided to go to bed instead of going down to dinner. I meant I didn’t get to have dinner with everyone, but that was okay with me. Having her fall asleep at 8:15 made me relax a little. She did push the limits like she always does. While staying in hotels was necessary, I didn’t like the whole pool situation. Knowing her younger cousins would want to swim I let her bring her bathing suit. Of course I think I had a 100 little heart skips as I watched her swim underwater. In the end she had a great time and I managed to keep calm for most of the swimming.

The day of the wedding was a very long day. It started at 6:00 am and went until 1:30 the next morning. I know my family will have many great memories of Rob and Natalia, the many many pictures we had taken, the New York skyline, the dancing and all the food. Good think he is the last one to get married because I think he outdid the rest of us, it was beautiful.

Now that we are back things are moving along as always. Jordan went today for blood work and her platelets are 123K. She says she is just Whatever about the number although I wanted to jump up and down and scream for joy. Here’s hoping my enthusiasm isn’t too much. She is still on Nplate and she has no restrictions from the Hemoc doctors. Neurology is a different story, and one we are working with.

Soccer season starts this weekend and I am looking forward to seeing our friends and have a great time together. We wish you all luck and happiness with whatever you are doing to enjoy the nice weather we are having.

Wednesday, April 3, 2013

His artistic eye goes beyond drawing

Devon has an artisic eye that he did not get from me.  My brain works in lines and shapes, I can barley draw a stick figure.  My mother on the other hand is an excellent artist.  She tells me all the time, "It's easy.  You just look at something and draw it." Yeah easy for her because she can draw, not for me I can't.  Devon has gotten this talent and over the years I have loved watching him create these beautiul pieces.  While I can't draw I love photography and have always tried to take artistic pictures.

I finally got a decent camera and played around with it.  I came up with the following photos.

Then Devon borrows my camera for a few hours and comes up with these pictures.

I was like what the heck how can you have my camera for a few hours and take these pictures.  I was proud of him and a little frustrated.  When I got to this picture I was like maybe instead of drawing you will go into photography.  He amazes me everyday.  I hope no matter what he does that he never loses his love for teh arts and keep moving forward pursuing his dreams.