Scott and I have talked and dreamed about starting a foundation for Trisomy 4p pretty much since they day we received Ellie's diagnosis and we were left with nowhere to go for answers or help. At the time, our lives were completely consumed by caring for Ellie and our other children so there wasn't much time or energy left for lofty goals, such as this, but we kept saying it would happen some day.
Much sooner than we expected and under different circumstances than we desired, some day has arrived and we are taking the first steps toward make our dream a reality.
I am excited to introduce....
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A huge thank you to Ali Carlile for creating this logo for us.
On February 28th we launched our new website friendsof4p.org. Right now it is just a blog where we are spotlighting a different child with trisomy 4p each day during March in honor of trisomy awareness month, but we have plans to gather more content and build it into a full website where family, friends, educators, therapists, and medical teams can go to learn more about Trisomy 4p and better understand these unique kiddos. Basically we are taking some of the valuable information we have access to within our private 4p group and making a public place for it so that others involved in the care of those with trisomy 4p will be able to learn more while still keeping our group a private place for families to share more personal and sensitive things.
This is only step one of many we will have to take to reach what we have envisioned, but we are excited to be starting this new endeavor that is very dear to our hearts.
In addition to the spotlights,
our 4p group is spreading awareness this month by changing our profile
pictures to these awesome custom banners Sarah Rodgers made for
everyone.
