“It is possible to love someone you have never met.”
A mommy seeing those two pink lines and then feeling her unborn baby’s first flutters and kicks and hiccups knows this is true. A mommy receiving word that referrals have been accepted and judges are ruling and tickets have been purchased to fly halfway across the globe to hold her baby for the first time knows this is true. A sponsor who receives that first informational packet from WorldVision or Compassion International and gets that first letter from her sponsored child now receiving education and food and clean water knows this is true.
And our family knows this is true of Lillian Grace.
We have never met Lillian in person. But we love her.
Lillian is a 19-month-old from our polymicrogyria support group.
Today, she needs our prayers.
Here is a note from her parents, Neal & Sandra Salerno:
On August 8th my 19 month old daughter Lillian will undergo a very invasive operation called a hemispherectomy of the brain. The doctors will disconnect her entire right hemisphere of her brain and remove parts as well. This is in effort to STOP the hundreds of seizures that she has daily. I ask that you wear purple on this day in her honor (for epilepsy awareness)…and say a prayer and/or send positive thoughts to her, our family, and her surgical team! You may read more about Lillian at www.polymicrogyria.blogspot.com
Thank you very much for your interest in our daughter Lillian Grace. I wanted to let you know how much it means to our family. The support that we have received from family, friends, and our church is amazing.
Here is a quick overview of what is happening to our 19 month old baby. About 10 months ago we learned Lillian had a condition called polymicrogyria. Gyria are the folds in your brain. Her brain formed with a lot of little folds rather than the big deep folds normal brains have. We are blessed in the fact that it only occurred on one side of the brain (the right side). The left side appears to be normal.
Due to this condition, she has limited mobility of her body on the left side, like a stroke victim. But more difficult is that due to the formation of the brain, she has brain waves that do not fire properly. In other words seizures. Most of them are subclinical, so you can’t see them, but she has 15-20 every hour (~300 per day). Drugs have not been able to stop them which is the issue, because it prevents her from developing and slowly begins to affect the good side of the brain. Untreated, she would eventually succumb to those seizures.
After much consultation and prayer we decide the only chance she has is risky surgery. So on Thursday, Aug 8th she will have a radical surgery called a hemispherectomy. During this procedure the doctors will disconnect/remove the entire right side of her brain. It will be an 8-12 hour procedure at Texas Children’s Hospital here in Houston.
Our hope is that this will allow her to lead a fairly normal life. Despite all of her issues, she wakes up every day with a smile. She amazes doctors with what she can do (eat, crawl, stand, and interact) despite what the MRIs show as the condition of her brain. She truly is God’s little miracle to us.
We can’t express how much your prayers for her mean to us.
Neal and Sandra Salerno
So, today we are wearing purple and praying for Lillian Grace. And we invite you to join us here on Facebook.