I wanted to share a post from a fabulous CDKL5 mom who lives in Australia and had a beautiful son with CDKL5 and has twin daughters with CDKL5. Because of her family the gene was identified and now kids are able to be diagnosed all across the world. They are the pioneers in CDKL5 and could't be a sweeter family on the earth. I so long to meet them in person one day. Asha and Lily look very similar and I would love to have the girls meet one day as well. Anyway I got this post on our CDKL5 yahoo group and I just had to share this lovely story about how small things can make a difference. Such as a video that took me about a day to make united two families on the other side of the world. I will second Leita on isn't the internet great and throw some props to God too. With him all things are possible. All things work together for his good. Hope you enjoy this as much as I did.
I saw the beautiful video you've put on YouTube and want to tell you a lovely story about how it let me meet another little girl with CDKL5.
Her name is Bianca and her mum left a comment for you saying they lived in Australia. There are only 7 children diagnosed in Australia and I had never heard of her so I sent her mum a message.
Her mum emailed back with her phone number and we had a long chat the following day saying we'd like to meet one day. They live in Sydney too but about an hour away.
I told her I was going to the Children's Hospital this week to collect some t shirts.
Yesterday I recieved an email to say the hospital called offering Bianca an appointment because of a cancellation today and could we meet for coffee.
I had no idea what she or Bianca looked like so wandered around the hospital until I saw the unmistakable leg crossed, hand in mouth,sideways glance of an exceptionally beautiful little girl who looks SO much like your Lily and my Asha!!
Isn't the internet great?
And please keep voting for CDKL5 on the Pepsi Refresh Challange, we are in the top 10and we will get the $50k if we stay there come Oct 31st at 11:59pm! Vote online with the widget on the top right of this here blog AND you can text daily 102973 to 73774.
I'll talk to you after I am refreshed from Nashville! :)
Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently th...
Goodness I hated last post. I couldn't even go back to re-read and edit. It was just yuck to remember that day/weekend. I hated the feel...
Last night was the viewing and today the memorial service. I don't even know what to say, this gal is speechless. I've been to funer...
This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight...
Deuteronomy 6:4-9 Talks about imprinting the commandments on our hearts, impress on our children, vs9 says Write them on your door frames o...