Sweet Ciara

February 19, 2010

Sweet Ciara

In December Waverly & I went to the MPS Conference in FL. We had the opportunity to meet the Bennett family. They are parents to 3 children with Sanfilippo. Their youngest passed away a few years ago due to complications from transplant. Ciara is 13 and Hunter is 11. Every time I saw Alicia and her husband with the kids, I thought of my future. It was very emotional for me.

Sweet Ciara is in the hospital. She is in critical condition in the ICU. She has pneumonia and requires oxygen. This is a serious illness for anyone, but complicated even more by MPS. Please keep Ciara and her family in your prayers. Ciara has a very special place in my heart. I see Waverly in her.

The family is traveling back and forth from the hospital and the expenses are getting high. If you are interested in helping this fantastic family, please let me know and I can give you details on making an easy and quick donation via PayPal.

*Thank you*

Comments

Anonymous said…

I really like when people are expressing their opinion and thought. So I like the way you are writing

February 20, 2010 at 1:59 AM

S.A. said…

Oh my. My prayers go out to Ciara and her family.
I will email you for their Paypal info.

I have followed your blog for some time, but just recently had my first child- through the prism of new motherhood, the horrors of this disease are even greater.

February 20, 2010 at 11:18 PM

Anonymous said…

Do you have copy writer for so good articles? If so please give me contacts, because this really rocks! :)

February 21, 2010 at 2:58 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.