Sophia’s Journey

Sophia is my full of life amazing 16yr old daughter. She is beautiful, brave, smart and sassy. She also has Rett Syndrome, a rare neurological disorder seen *almost exclusively in females.  It is as prevalent as ALS, Cystic Fibrosis, and Huntington's disease, yet so many people have never heard of it! Sophia was born “normal” and healthy, meeting most of her milestones until she was a toddler. Then suddenly, almost overnight, her world turned upside down and she lost all of her language, functions, and skills. Sophia no longer walks, talks, eats by mouth, nor has purposeful hand use.  She has had dozens of surgeries, including a spinal fusion, gallbladder removal, multiple ports, and a VNS. Sophia takes multiple medications, multiple times a day. Additionally she has a VNS implant to help control seizures.  All that combined, she still seizes daily. As if Rett wasn’t “enough” to contend with, Sophia was diagnosed with CVID (Common variable immunodeficiency) in 2013. CVID is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. Basically, Sophia's doesn't have very much of an immune system, and there's no known reason, cause or cure. She is at a high risk of illnesses and infections. We are treating this as best we can with regular IVIG infusions, (AKA her Super Powers). Sophia receives these infusion in the Special Procedure Area (SPA) of University of Chicago Hospital. She currently goes every 12 days for her infusions, each lasting 5-6 hours to administer.  Through the years we have made hundreds of trips to the ER, only to be admitted for treatment and care.  Her respiratory system is fragile, compromised, and generally weak.  Her immune system nearly nonexistent. When she is not in the hospital, she is going to the hospital for treatments or care.  In our day to day life we do all we can to not expose Sophia to anyone who is sick. Catching even a simple cold will most likely turn into pneumonia, and an extended PICU stay.   She has been though more in her young life then most people will endure in their lifetime. Yet she handles it all with dignity and grace; seldom shedding a tear. She has THE most amazing beautiful smile... It can light up even the darkest days.  Her eyes speak the words I can no longer hear her say.She is strong. She is brave.She needs my help, and I need yours...As Sophia's mom, the three hardest words for me to say are: I Need Help.Yet here I am. Sophia holds a special place in so many hearts... So often, people ask us what they can do to help Sophia, and make her life brighter.  As her mom, I feel I should be able to provide everything for her, so I struggle with this. However, a new need has become overwhelmingly apparent in recent months. We are in need of a new wheelchair accessible van for Sophia.Sophia's trips back and forth to the hospital are vital to her care and well being.  When she is healthy and stable she typically has 6-7 appointments at the hospital every month, with an hour drive each way. 4 years ago we purchased a used 2002 E150 Ford Full Size Conversion. In the past year we have encountered multiple extremely expensive problems with it. Sadly, it’s time to cut our loss and trade it in. With the help of our family, and some creative financing, we have managed to come up with most of the funds needed to purchase a new van, with a brand-new *manual (nothing to break) conversion. We are soooo close, but need your help. This is the ONLY way I can take Sophia to the hospital and get the infusions she so desperately needs to simply Survive. Admitidly, I'm afraid of what will happen if the van dies, or needs more repairs before I can get her a new one. There's SO much she can't do, but she did so much joy in the simplest things. Watching her brother play football, visiting the coffee shop, and going for a drive on a sunny day to name a few. I humbly ask you to support our fundraiser to provide New Wheels for Sophia.  Please share our story and invite your friends and family to do so, too. And if it's in your heart (and checkbook) please donate.  We need your help.New Wheels for Sophia will:1. Allow Sophia to continue to receive her Super Powers (IVIG) every 10 day as well as all her other regular doctor appointments. 2. Allow Sophia to get out and enjoy the world with her family!3. Prevent Mama from being injured due to heavy lifting of Sophia and the wheelchair.What do you say? Will you help us get Sophia on the road? She's got a lot of living to do!!With heartfel appercaition,MimiAny funds raised over the amount needed to complete this purchase will be used specifically for her trips to the hospital. (Parking passes, tolls, gas cards) and to help cover overnight accommodations when we travel To Cincinnati children’s hospital (every 4 months)