Livi is a beautiful little girl. On love4livi.blogspot.com, one of the blog authors, Lauren, describes Livi’s situation as this (scroll to the bottom for the fundraiser info):
“I had the privilege of getting to know Julie during the short time she spent in New Jersey. I always admired her and thought she was an incredible person in so many ways. In truth I wished I could be more like her. She has an amazing spirit, and is just a wonderful person to be around. So while Julie and I were never the closest of friends, I know she has friends much closer than me who are probably more qualified to write this… I can’t help but feel drawn to her, and an overwhelming desire to help her in anyway I can. This page has been set up by Julie’s friends to help raise funds for all the many expenses that come along with having a baby with special health needs.
This might be a good time to tell you about Julie’s sweet two year old daughter Olivia. Olivia is just the most beautiful precious little girl you could ever lay eyes on. And unfortunately I’ve only ever been able to do so via pictures! But even through pictures this little angel’s sweet spirit shines through. This is my version, pieced together from Julie’s blogs, of Olivia’s story. So sit back, grab a tissue and read away…
When Olivia was first born she was absolutely beautiful, and breathtaking, and squeaky. She had trouble with eating, rabid breathing, and this adorable, yet troublesome, squeaking. She was diagnosed with Laryngomalacia. It was manageable and would likely resolve on it’s own. It posed some problems, but we managed. After 11 months of RSV, multiple ear infections, and hospital stays they were going to have tubes put in Olivia’s ears. It was at this point someone noticed that something more may be going on with sweet Olivia. This doctor recommended seeing a geneticist. Scary words for any mother to hear. In Julie’s words here is what she found out from the geneticist: “Olivia has a very, very rare chromosomal disorder called 13q Deletion. As I understand it, at her 13th chromosome, there are breakpoints. Within those breakpoints are about 102 genes. That missing material of those genes is what is causing many of her problems. There are learning disabilities and developmental delays in addition to the various health problems. We aren’t sure to what degree this will affect her, although she has already been in various therapies for several months already addressing these issues. Most notable, Olivia is missing the RB1 gene. Because of this specific deletion, Olivia is at an incredibly hi risk of retinoblastoma (eye cancer) bone tumors, and other related tumors. While the 13q deletion syndrome is not fatal, complications from it can be. We are being sent to see special teams in Seattle at an urgent status to start doing these scans. She will have to have these scans every 3 months for several years.”
Not what any mother ever wants to hear. But in May Olivia had her first eye scan and all seemed well. I cheered silently in front of my computer when I read Julie’s update. And then my heart sank this week when I saw postings on Julie’s facebook that things were not well with Olivia. As it turns out, that while Livi was tumor free, just a few short months ago – that is no longer so. She recently took a spill while playing at the pool, that caused some unusual reactions. What appeared at first to be a bump and nothing more soon alarmed Julie that not all was well. Livi’s once blue eye now appeared brown, and a glimpse of white under her left pupil. Alarmed Julie took Livi to the local hospital. Here they never heard of Livi’s condition, assured Julie she’d be fine, and sent her on her way. Could you just imagine the mama bear instinct kicking in here? It must have been heart wrenching to have to wait until Monday to get in to see their specialist in Seattle. And then the day came where they got their answer…. and I can’t imagine ever hearing these words… but Julie’s worries and suspicions were confirmed, Olivia had developed a retinoblastoma. Considering she was tumor free just a few months ago, and now has a sizable eye tumor that was confirmed cancerous is quite alarming. As of now, it appears she will lose her left eye and start chemotherapy. With a two year old daughter of my own, my heart just shatters imagining what it would be like to hear those words about my own daughter. Cancer. Chemotherapy. Removing an eye. It’s just too much for any mother to bear.”
On October 29, a fundraiser will be held in Lindon.