Written by Acelynn Rae’s mom
When Raenalynn was born I knew right away that she was special. It wouldn’t be until years later when I would find out exactly how special she was. She was perfect from her blonde hair to her pink toes. After birth, she had an issue with having a very low resting heart rate and had to stay in the special nursery for a couple extra days. They couldn’t figure out the problem and chalked it up to being her normal. I never thought about it again. Rae has always been an exceptionally bright child. She was talking very early and has a love for learning. She hit all of Her developmental milestones early. In Dec of 2012, we noticed that she was walking funny. Hr right foot was turning in and she was starting to limp. It was only on occasion and since Rae does silly things all the time we just watched her. It got worse to where she was doing it all the time and began dragging her foot. In February, we took her to see her pediatrician who referred us to an orthopedic specialist at Primary Children’s Hospital. The soonest we could see the doctor was April 1st. On St. Patricks day she started to lose the ability to use her right hand. The next morning we took her to the local ER who transferred us directly up to Primary Children’s ER. We spent all day being seen by many different Neurologists who were 98% sure there was nothing wrong with her brain. But admitted us for a full brain and spine MRI the next morning. Rae was such a trooper and did so well. I, on the other hand, was falling apart. After she was returned to our room following the MRI, five doctors had come into the room to deliver the worse possible diagnosis. Raenalynn had a brain tumor. Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located on the brain stem. It is inoperable and 100% terminal upon diagnosis. Most children pass away between 9-12 months. There is no cure or treatment that has ever worked. Our option was radiation and oral chemotherapy to try and shrink the tumor to give her more time. She started radiation a couple days later. Over the last 17 months she has completed 30 radiation treatments, a full year of oral chemotherapy, 7 MRIs, a throat scope, a swallow study, and many more lab and hospital procedures. We have been very lucky to have had 17 months with her and her tumor has remained stable! She is the strongest kid I know! In Sept of 2014, Rae will officially be in the 5% of DIPG children who have outlived the normal prognosis.
We met the mascot miracle foundation through another DIPG family. Through our journey we have had the privilege of adding to our family many many people. A few of those are DIPG families themselves. Our sweet friend Brylee wasn’t doing very well so they had an early Christmas party for her. One I will never forget. Felix the Falcon had dressed up as Santa for her and stole the show! We were invited to go on the Polar Express in Heber with the mascots and boy was that a party! Leo the Lion was the only mascot Rae and her brother Xander were not afraid of. Since then we have gotten to spend a lot of time with the mascots at various fundraisers and events. Felix and Leo will always be Rae’s favorite! They have put so many smiles on her face and are the subject of some very funny conversations. We support the Mascot Miracles Foundation and everything they stand for. They have become like family to us and we are so thankful to have been a part of them.