Wheels for Sophia & Emma

Hi! I'd like to introduce you to our family.  Mike & Mimi were married July 20, 2013. Mike has 3 amazing children: his son Tracy (20) and daughters: Emma (15) & Chelsea Burke (13).  Mimi has 2 equally amazing kiddos; Sophia (12), & son: Calan Burns (11). Together we make one big, loving, happy, silly, crazy, medically filled family. You see, BOTH Emma and Sophia have Rett Syndrome!  

Rett Syndrome is a debilitating neurological/movement disorder seen almost exclusively in females.  It is as prevalent as ALS, Cystic Fibrosis, and Huntington's disease, yet many people don't even know it exists!!   How were we so fortunate to meet each other? Well, that's a story for another day ;)  Today, I'd like to tell you about our girls:
 
Emma is 15; and in 7th grade.  She LOVES to eat, socialize with her younger sister or older brother, and hang out with her dad and grandma.  She enjoys going to school, swimming, and swinging.  She is super smart, has the sweetest smile, and the best laugh! But NOTHING is easy for Emma. She works HARD everyday to maintain the skills she has.  Food is a great motivator for her (isn't it for us all)? But even eating is hard work sometimes for her.  While she does walk, she always has to be guided and assisted; one bad fall, or one broken bone can render her immobile...  She battles with seizures, and takes daily medication to control them.  She attends a regular school, but is in special classes.  Her hands don't work in the ways she wants them to, and she participates in many therapies.  Emma cannot talk, but she has LOTS to say. You only have to look into her eyes... Life for her isn't easy, but we all do our best to keep her healthy, and happy. 

Sophia is 12.  She no longer attends school, and is homebound. She can no longer walk, talk, eat by mouth, or has purposeful use of her hands.  Sophia suffers from regular, almost daily seizures. She takes multiple medications, multiple times a day and has a VNS implant to also help control them.  Additionally, in April 2013 Sophia was also diagnosed with CVID (Common variable immunodeficiency.)  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 o known reason or cause.  As a result her body cannot fight infections like most peoples can.  We are treating this as best we can with regular IVIG infusions, (AKA her Super Powers). Currently, she goes every 2.5 weeks for her infusions, which take 5-6 hours to administer.  Sophia spent 9 of the past 17 months in the PICU recovering from surgeries, and/or fighting severe infections.  We have made countless 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, welcoming, and 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.

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 our family.  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. Unfortunatly, I can't provide for this on my own.  Converted vans can cost twice as much as a typical van, and once her medical needs, supplies, and bills are paid for the money simply isn't there for a new van. 

Sophia's trips back and forth to the hospital are vital to her care and well being.  She must travel over an hour each way. In addition to going for her IVIG she also sees multiple doctors, regularly.  When she is healthy and stable she typically has 6-7 appointments at the hospital every month. Our current van is wearing out.  It is a 2003 E150 Ford Full Size Conversion.  It has nearly 200,000 miles on it.  It is at the point where it continually needs repair work. The lift alone has gone out twice in just the past few months.  Currently the windshield and breaks need to be replaced, and the tires will need to be replaced soon. This is the ONLY way I can take Sophia to the doctors and to 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 repair before I can get her a new one. This is the only way I can take Sophia to the doctor, the hospital, and show her the world.  There's SO much she can't do, but she loves doing simple things like watching her brother play football, going to the store, and going for a drive on a sunny day.

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 2.5 weeks and get back and forth to all her other regular doctor appointments which are over an hour away.
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,
Mike & Mimi

Donations

  • Noah Kosteba 
    • $100 
    • 36 mos
  • James Scott Szczepanski 
    • $25 
    • 41 mos
  • Marci daCamara 
    • $50 
    • 61 mos
  • Elsa Flores Kluga 
    • $50 
    • 62 mos
  • Mary Ellen Dutton 
    • $50 
    • 62 mos
See all

Organizer

Mimi Burke 
Organizer
Crown Point, IN
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