Friends With FOP

I really need to get back into this blogging thing.  When Erin was diagnosed with Fibrodysplasia Ossificans Progressiva in June 2008, Alan and I felt like our child was the lone victim of this crippling disorder.  We were quickly proven wrong when we became members of IFOPA (International Fibrodyslpasia Ossificans Progressiva Association).  Still we felt that we needed to get the word out about FOP.  Although our efforts cannot be channeled through direct fundraising, we definitely can spread the word.  So here I am…Erin’s mommy…making yet again another pledge to be better at blogging.

So far our summer has been low-key.  In April, I submitted Erin’s profile to Make A Wish Foundation (MAW).  I really need to send a shout out to Dawn Earl, ARNP (Erin’s case manager at Seattle Children’s Hospital in the Genetics department).  Dawn received the paperwork and submitted it back to MAW the same day.  I am proud to say Erin was accepted as a Make A Wish child.  Why MAW now and not when she’s older?  Erin loves the Disney princesses (seriously, what four year old girl doesn’t?).  Erin literally told us that she wanted to meet the princesses.  After hemming and hawing on the topic, Alan and I decided this was a good time.  We took into consideration that Erin has most of her mobility right now and she will be able to ride most of the rides at Disney.  So she won’t be able to ride Space Mountain…oh well!  FOP is very unpredictable and as a family we would truly appreciate some good luck right now.  Shoot, we would love some good news at this point…so our upcoming Disney trip is extremely precious to us.

So…Erin’s been accepted as a wish child…two weeks later we meet the two volunteers assigned to Erin’s wish.  Here is Cherelle and Eun Ju on the day they came to the house so Erin could officially declare her wish.

Cherelle and Eun Ju came to the house on May 5th armed with goodies for all the kids.  Transformers for the boys and Disney princess stuff for Erin.  Since then, our trip has been booked for September and our flight reservations have been made.  This past Sunday Cherelle and her daughter stopped by to give us five brand new suitcases for the entire family.  Erin was very surprised to get a Barbie doll that was made especially for Make A Wish Foundation during their visit.  I think this is THE Barbie doll that will catapult Erin into playing with Barbies.  That night she had all of her Barbies, which included ones without clothes and ones without hair, all lined up on the couch playing “school” with Erin as the teacher.  Thank you Cherelle and Eun Jun…it really is the little things that spark the smile in a child’s face.

Needless to say, Erin is a very happy girl right now.  She’s telling EVERYONE that she’s going to Disney World to see the princesses.  My poor daycare children, I am sure they are going home telling their parents they want to go to Disney as well.  I am very grateful to the company Esterline in Bellevue, WA for sponsoring Erin’s wish.  With the money they have donated to MAW the McCloskeys will spend a week at Disney as and let Erin be a “real” princess (not just a Mommy and Daddy princess).  Thank you to Esterline and thank you to all those who donated to MAW and who have donated their airline miles to make a child’s wish come true!!

If you would like to donate to Make A Wish, click on the logo and you will be directed to the Make A Wish Foundation website.