I am a stay-at-home Mom with 4 awesome kids. I have been married to Rob for 12 years.
We went to Disneyworld when Make-A-Wish sent us in April. It was an amazing trip and they made every member of the family feel special and took care of EVERYTHING for us.
About my family:
We have 4 awesome kids, Alexa is almost 9, Katie is 7 and has autism and Ryan is 4 and Jack is 2. Our kids love their grandparents and have lots of Aunts and Uncles that would do anything for them,
Name(s) of child(ren)/individual(s) with Duchenne:
I was just poking around this sight and ran into you. My name is Lauren Fritz, and I too, have two boys with DMD. We participated in the Johnsons' walk this past fall and have become friends with them. My boys, Jake and Ryan, are 6 and 3 respectively. We also go to CHOP and see Dr. Finkel, though I just learned that our appt. was cancelled this past week due to some kind of CHOP confusion. John, my husband, the boys and I live in Pottstown, PA. Our boys were diagnosed summer of 2008. They have deletions of exons 46-47. My older boy is on Deflazacort. Ryan is not, though I have a feeling they will want him to start soon. Well, good to meet you! (albeit the circumstances are crappy...) Lauren
Ah - the Boston accent, that usually comes back to me after a couple beers ;-). I staht pahking things everywheah. I grew up in Lynn and moved down here to PA just before I could legally go to the bars around Fenway.
We'd love to have you at our run\walk, the more the merrier! There will be a couple other families there with young boys with DMD, so if I'm nto running around with my head cut off trying to coordinate things,I'll try and introduce you (after you and I meet...)
Wow! We do have a lot in common. How are your kids doing? My son with Asperger's starting having seizures again after 3 years seizure free. It's been a long day/night, it's a blur. I hope we get a chance to talk very soon. Take care.
My name is Donna Doyle and we are having a huge fundraiser to benefit Parent Project MD Saturday Oct 3rd from 9 - 5 at the Quakertown Airport. This is being put on by the PA families and we would love to have you come and meet some or our families. You can call me if you like at home in the evenings at 215-345-7421.