This is my daughter, my gravity, my everything. I'm probably being biased because shes my child but she really is the sweetest girl. Some of her biggest hobbies are playing xbox( shes good too!)and she wants to be a youtuber someday, ice skating and cosplay. Absolutetly loves her family and her dog little bit. And although she is suffering from anxiety, ( self conscious of her appearance) she still continues to try. Recently she cut all her hair off and donated it to locks for love because in her words; she wanted to help the sick children feel better. She really doesn't remember when she was 3 she was hospitalized for 3 weeks. I do, like it was yesterday. she got cat scratch fever which in turn gave her ADEM (acute dissemenated encephalomyolitis) her mother and I never left her side. She spent christmas, new years and her birthday fighting for her life. The treatments worked and she was able to come home. She's had a long recovery of physical, speech and occupational therapy. (few years after at disney)
Over the years she has tried to do sports but quickly gave up saying that it was just too much and that it hurt. I thought she just didn't want to be active, but as the time went on, the pains continued and we started noticing physical changes, especially after the last growth spurt. So we took her to the doctor. The Dr. thinks she may have Marfan syndrome, we have to have that test done also. But, after 6 weeks of wearing a heart monitor (which she couldn't stand) numerous tests and scans, the CT revealed that she is suffering from severe pectus excavatum and it is affecting her lungs and her sternum is rubbing her heart, causing it to elongate. The Dr. said that 2.5 is normal, 3.25 requires surgery, and hers is 4.5 which requires open repair( ravitch procedure) they are cutting her horizontally and have to modify her sternum and then install a rod to secure it. So now at 13, this sweet girl is going to have to fight once again and this time a very painful recovery. Unfortuneately for us, the costs just keep getting more and more. I've pretty much exhausted my savings and sold one of my cars to pay for testing, scans and appointments. And even with insurance the out of pocket expenses keep racking up. Just need a lil help, before we can get the surgery underway, she needs a nickel test to see if she will have a reaction to the metal. then she has to be in the hospital for a week after surgery, home recovery, meds, therapy and follow ups and any other unforseen expenses, and an outpatient surgery to remove the bar in 6 months. not to mention that I will not be leaving her side again, meaning I'm going to have to miss work.. I'm sorry for the long read but i just don't know what else to do. She is the reason I breathe and I will do whatever it takes to help her remain happy and healthy.. Thank you for your time and god bless.
(first time ice skating)
(we got in the paper!)