Loving on Little Lane
Please read about our sweet girl. She is such a pure light. She is the sweetest, cuddliest, funniest, little baby. Follow us on Instagram for day by day updates- @amessofmays
Lane is 2 years old. She has never spoken,walked, and can’t stand independently for more than a few seconds. She has always had poor control of her legs, mostly her feet. When I was pregnant with her, her kidneys were extremely dilated, but after she was born we were told she was doinggreat and we wouldn’t need any further scans. Fast forward to march, Lane was having constant UTI’s, still was extremely delayed developmentally, and extremely constipated. After a specialist visit, we were told she would need an MRI.
This is when things changed. We went for kidney problems, we were told she has a spinal cord malformation that would bean easy fix in surgery- and she would live a very long, very happy, normal life.
Lanes MRI showed that her brain isn’t growing. Parts of her brain are thinning out, parts are too big, and she is missing a lotof the white matter that is supposed to be there. There is such a long list of problems with her brain, I almost can’t even name them all. This was terrifying to us. We went thinking Lane would have to have spine surgery- and this was scary to us. We couldn’t even fathom what was coming next. We spent so many nights crying and praying over here that her surgery would go well, but we were also very hopeful that she would quickly feel better and be able to get up and get walking and be able to start living her life as a normal 2 yearold.
That was on May 7th. A few weeks ago we got the news that every parent I think has had a moment to think about. Lane has markers for a terminal progressive brain disease. We are completely shattered, heartbroken, and honestly we are in disbelief. This doesn’t feel real to us, and I’m notsure when it’s going to start. The thought of losing any of our children has crippled me. It has been my biggest fear since I started having children. Im watching it happen first hand, and I can say I wouldn’t wish this on anyone. This disease isn’t like any other disease. Children with this disease live a normal life, hit their milestones, and are normal kids until one second they just aren’t- and there is no going back after that. I can’t think of anything worse.
We are enjoying every second, every minute, and every hour with her while we have it. Now this is the part where the donations come in. We are going to get Lane into a clinical trial, if her diagnosis is confirmed to be MLD. This trial works with gene therapy. It is having great success and y’all it is SAVINGS KIDS LIVES. So why not Lane? We will save herlife. But we need help. We can’t do this alone, and while I feel so much guilt for asking for help- we need it. We need everypersons help. We need prayers, we need support. This is going to be a long road, but we are ready to save our babies life. Please if you feel called, take a minute and pray for us and pray for our baby. And if your heart allows please donate. $1, $5, anything. Every single cent will help us getto Italy to save Lanes life.
