Courageous Chloe
Winter of 2018/2019 Chloe, at the age of 8, started to complain of leg pain and asked to take a break from gymnastics classes. We thought it was merely growing pains and her then pediatrician confirmed that. By fall/winter of 2019 Chloe's legs were now visibly weaker and she was having problems lifting things, climbing stairs, complained of her legs hurting even more and was now falling down on a regular basis. Her pediatrician now attributed this to mere "anxiety".
Not happy with that input I sought a new pediatrician for a second opinion. January 2020 the new doc immediately ordered blood work which showed Chloe had neuromuscular disease. Chloe was immediately referred to child neurology who slapped the "Limb Girdle Muscular Dystrophy" diagnosis on her. Chloe at this point had lost so much muscle strength she could hardly walk or get herself out of bed, could not wash her own hair or even brush her own teeth. We were sent home with zero hope and a prescription for a wheelchair and told to contact the Muscular Dystrophy Association for support. We were told genetic testing would pinpoint the subtype of muscular dystrophy Chloe had... however it did not!
Devastated and sleepless I began my own research and devoured information. I kept searching and searching for something to make sense of all this. I came across a study from 2018 about how "Limb Girdle Muscular Dystrophy" is often MISDIAGNOSED and is actually a rare myopathy brought on by a rare autoimmune disease that is now showing up in pediatric cases across the globe! In 2018 doctors at Johns Hopkins had developed a test for a certain antibody found to be linked to the rapid onset of muscle weakness that presents the same as limb girdle muscular dystrophy. Armed with this info I contacted the pediatrician who said this was not her specialty and told me to contact neurology. I contacted child neurology about this test and disease... only to be told, "Oh no, this is too rare, this only happens with statin use in elderly patients'".
I booked an appointment anyway and brought printouts of the studies from Johns Hopkins and begged, demanded, them to test Chloe for this antibody as it was just a simple blood draw. Six weeks later that neurologist called me, in shock and congratulated me on my proper research and diagnosis. Chloe indeed tested high positive for the Anti-HMGCR antibodies! This was great news because that meant there was treatment and HOPE!
April 2020 Chloe was re-diagnosed with Anti-HMGCR Myopathy, an autoimmune induced neuromuscular disease. We were told she was one of 43 known pediatric cases in the world. This disease attacks and kills her muscles and is very hard to treat. We have spent the last 3 years trying to tame this autoimmune response that unfortunately does not have a lot of data nor research behind it. Treatment has been a lot of trial and error. Some treatments have left her worse off than when this all began. We have spent countless days and nights in the hospital and have seen hordes of "specialists". This has all taken a major toll on not only Chloe's body but her mental health has suffered a great deal as well.
Enter the Wishing Star Foundation. We were already familiar with this organization through their "Send a friend a Goat" fundraisers. In fact we had volunteered one year just because of the goats, and someone suggested we nominate Chloe as a Wish Kid. A year later, now at the age of 12, Chloe was chosen as a Wish Kid and was given her option of a wish.... a trip to Disney? Universal Studios? Anything her heart desired within reason of course. Chloe being the gamer kid that she is, chose a dream bedroom makeover with a gamer theme! Now enter Corey Thomas with Special Deeds for Special Needs Kids.
The moment we met Corey with SDSN Kids he made Chloe feel included and listened to her needs, wants, and wishes. He listened to every detail, all of Chloe's very specific ideas, took note of everything and often touched base with us throughout the design process seeking Chloe's input on everything. Corey was amazingly professional and compassionate. When install day arrived, Corey came ready with an army of volunteers who, with the speed of a home renovation show on TV, transformed my daughter's bedroom into her dream, her vision and beyond all in one weekend!
His excitement and energy throughout this process was contagious. It was as if Chloe was his own child that he would do anything for to make life more comfortable in-between all the trips to the hospital to get poked again and again by those horrid needles. Not only was the end result a dream, but the process was too. Corey Thomas gave light to my child when she hadn't felt uplifted in years. I'm not even sure Corey and his organization are aware how much light they bring because it is immeasurable. The gift of a dream room is one thing, but the gift of hope and an uplifted spirit to a chronically ill child is priceless. SDSN Kids is one phenomenal organization who in my humble opinion, is run by angels here on earth.

The Reveal
The scream of excitement Chloe let out as she came into her new room filled the entire house with joy. She was beside herself to the point that she couldn't hold still for a second. Her eyes were pulled this way and that way finding little treasures everywhere throughout the room of everything she had asked for and even more. We were all in tears of overwhelming happiness for this amazing little girl including her family.
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Extra Surprises
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Our Bedroom Makeover Plan
Chloe is one of the coolest kiddos we have had the pleasure of doing a room for. This young lady was into so many different things we weren't even sure what the theme was gonna be. Out of everything including a gaming room, Ninjago legos, Sonic the Hedge Hog, Coraline, Dr. Plague, and SCP "Secure Contain Protect" we decided just to give her all of it. This was her wish through the Wishing Star Foundation and we were thrilled to make it happen. Somehow we managed to make the room flow amazingly including a lightning storm cloud above her bed and a whole wall dedicated to her hedgehog, Kyle. She wanted her bed in the closet as a day bed, lots of shelves for her collectibles and plants and a cool gamer setup. This is still one of our favorite rooms to date and we look forward to working with the Wishing Star Foundation again