I was doing some cleaning of the bookshelves when I came across the book Fred and Reb passed to us.
It reminded me of the time when we just discovered that Kaelyn’s journey is going to be different.
I supposed you could say it was dark days.
What to do? We didn’t know the when, whats, hows and why.
We could only turn to the Internet. We found articles writing about SMA being the number 1 genetic baby killer, does not live pass 2 years, no cure. It was depressing.
We found the Muscular Dystrophy Association Singapore (MDAS). Sent an email in asking for any help but was expecting my mail to be lost in the imaginary heap of mails that is the enquiries mailbox.
But we did get a reply and they linked us up with parents who were willing to share their experience with us.
Fredrick and Rebekah was one of them. They let us visit them and they shared their experiences of their own. Their younger daughter, Danielle, also has Spinal Muscular Atrophy (SMA).
It sure helps with a helping hand, especially one who have walked through the road we have to take.