you'll hold that right there and then you'll clap it but watch your fingers Caitlyn is a very determined little girl um she never lets anything get in her way she likes anything that's got to do with American Girl dolls fishing hunting everybody knows Caitlyn everybody knows her story she got people rooting for her at every Walk of Life all right give her a toss people they're drawn to her I think it was around 19 weeks pregnant um we found out she had club feet but we really didn't find anything out until she was about 3 and a/ half months old I had her all day and she just cried and made noises and squeaky breathing and I met Jamie at the front door and I said we're going to the hospital so we took her to Children's Hospital that day met Caitlyn pretty soon after she was born I've known her and her family there their whole lives I met them in the hospital I had to tell them that their daughter had a genetic problem and that that was likely the cause of her problems with her speaking and her weakness she had uh her feet weren't working very well and her uh ankles and legs were a little bit misshapen that's a hard diagnosis to hear they came up with a diagnosis of distal spinal muscular atrophy genetic mutation is in a gene called trpv4 which is an incredibly rare uh genetic mutation this diagnosis of distal spinal muscular atrophy is what led to it and that in combination with the vocal cord dysfunction that she has it's very unique and it required this uh invasive management where she needed to be intubated in order to keep her oxygen levels up and then she needed a tracheostomy so that she could be separated from the machine Jamie and I had a hard decision to make they told us she's been on a vent for too long we can't take her off the ventilator so the only option is a tracheostomy to get her off the vent I looked at Jamie and said Jamie we brought her here to fix her we got to fix her and this is how we fix her putting the tra in her she's a rare presentation of a rare genetic disorder and she's got to be at a place like children's hospital where we can help a family like that spent 37 days at Children's Hospital Jamie hardly ever left I came home gutted every piece of carpet in the house because with the tra they trying to cut down on dust and get ready for a nurse to move in the house with us stainless children's uh offered so many opportunities to our family and our friends to learn the correct way to take care of her it it's difficult if you've never been around a tra to take a tra out and put a tra back in one night Caitlyn was asleep and we were all in bed and she started making an odd noise I had turned on the light and she had pulled her tra out and it was still wrapped around her neck so I took her in the spare bedroom Jam's on the phone calling 911 we get it off she's turning blue get the tra in ambulance guys show up she recovered with no issues but it was the darkest day of Our [Music] Lives just this past fall she had to go through having a shill procedure done to her back rods pins screws tracks to get her scoliosis straightened out because she had Advanced scoliosis that was uh moving her lungs moving her organs around it was a lot and hard and just a just a pile of stuff in your back it does not feel good at first there's a lot of different ways that Imaging is important for for taking care of Caitlyn she's had surgeries to help improve the function of her legs um and she's had a lot of Imaging to address some pain complaints that she's had in her legs what I remember about the jobb in um IM Center is turn down this hallway and then you see just this big bat um it's very cool the staff at the Imaging Center has always been super great to um Caitlyn and always going above and beyond it's been excellent like the nurses and doctors and all of the staff there are really nice and they hear you know it's not just about snapping a picture uh it's it's a start to stop uh they offer the whole package there so hopefully we are on a Smooth Sailin Health Journey but you know there's always her Airway we have to think about and also her back so in the definite future I will add another procedure for my back where they use the whole entire spine together like any child we are here to help them be all they can be and when you need a child like Caitlyn especially when you meet them at Birth like that it's hard for that family to see how a child can be all they can be with these problems but then you meet Caitlyn and you see how it's possible I wish that she can just grow up live independently do the things that she wants to do when you make a donation to Children's Hospital uh you know you're making a huge impact on the kind of care we can offer children like Caitlyn and their families that money goes straight to supporting the primary Mission and Caitlyn and Brian and Jamie that's our primary Mission I want to say thank you for helping Children's Hospital go that extra mile having child life and having the dogs and having the gardens it was it's amazing to see what the donors that little piece of money that you donate to it it can really help this you make our life as parents with a sick child in the hospital a little bit easier and I can't thank you enough [Music]