Hey all, I’m popping in to let you know that I’ve spent the last few weeks telling a bit more of Pearl’s story over on Instagram. There’s a lot that many of you are quite familiar with if you’ve been reading this for long, but there may be a bit more to see, too! I’ve tried to take a photojournalistic approach to telling exactly what day-to-day life for Pearl, and with Pearl looks like with the hope of bridging a gap between two worlds. I’m not sure how long I’ll be telling this story via this means, but I’ve used the hashtag, #PearlHasHoPE so that everything will be easily searchable. If you’re interested, my Instagram name is @ebrown_photo. Thanks!
Pearl Joy Brown
Pearl Joy Brown 
Hello my name is Christal Stanley I’m a mother of four..I just had a baby girl on January 30,2015.. And she have the same condition now she hospitalized from a high temperature.. Which leaded to her having a seizure while I was holding her.. And I had no clue I don’t really know much about this condition but all I keep hearing from her primary doctor is she’s not going to make it.. I was wondering do you have any suggestions on another doctor.. Who could give me hope even though I know it’s very little..My kids have gotten so attached to her and I don’t know how to tell them she’s very sick because they wouldn’t understand.. Being three,five, and thirteen, and she also have the cleft palate lip..Your help is really appreciated.
Hey Christal, congrats on your new baby girl! Here two things to check out to get you started…
http://familiesforhope.org
and
http://carterdatabase.org/hpe/centers/texas.html
Both of these are tremendous resources, and Families for Hope is a great way to be brought into a community that is eager to help! I hope this gets you started on things. This is a much bigger community than you one may think at first.
I’ve “found” and “met” your family and Pearl through my Instagram friend Linda, mother to Joseph. I am mother to four boys, one named Simon, who lived 7 beautiful days and 22 grace filled minutes. He had full trisomy 13, holoprosencephaly, and a slew of other conditions. I am so thankful to be a bystander (but actively praying) for Pearl and your family. Because of Joseph, I’ve found a beautiful family living for Christ discipling many “watching” your insta feed. Much love in Christ, Amy Balentine
Thank you, Amy. And thanks to Linda, Joseph, and Simon as well. These children are ties that bind over many miles. Love to you all, as well.
Precious girl. I wish her and your family love and happiness always.