Here is their story in Dawn's words: "In December 2016, Marissa, then age 12, was hospitalized following a cold. She was incredibly weak and unable to walk or sit unassisted. We believed she had pneumonia. The doctors also told us she had an extremely rare case of acute cerebellar ataxia and would get better in a few weeks to a year. However, we had been fighting for 8 years, knowing something was wrong, so we pushed for genetic testing. After an excruciating four week wait, our fears were confirmed when we were told Marissa has Friedreich’s Ataxia (FA). We chose to have our 5 other children tested and learned that Josiah, our 6 year old, also has FA. FA is a rare, genetic, neuromuscular disease for which there is currently no treatment or cure. It is progressive and terminal, causing loss of motor function, slurred speech, hearing loss, scoliosis and heart disease. Individuals typically die by age 30 from heart disease and complications. It seemed overnight our world had changed. The children require monitoring by a team of many specialists (cardiology, pulmonology, neurology, orthopedic) whom we visit in Iowa City. They also receive physical and occupational therapy. Marissa, who had been clumsy but walked independently, now relies on help from others or, increasingly, her wheelchair to get around. Josiah is still walking independently, but falling more. It is truly just a matter of time before he too, needs a wheelchair. When we purchased our home, we had no idea we would need to accommodate wheelchairs. The home is not accessible or safe for Marissa and JoJo. Thank you so much for helping to make our home safe for the entire family!"
Since Dawn wrote the above there has been an update: During the first week of April 2018, Marissa will undergo spinal fusion surgery in an attempt to help relieve the excruciating pain she is constantly in. The surgery is a risk, and may mean she will be entirely wheelchair bound from this point forward. Our prayer is that it will relieve her of pain and enable her to regain a bit of her mobility for a period of time. But we are preparing for every eventuality. In either case, Marissa will still increasingly depend on her wheelchair because of the disease's progression. Currently, the house is entirely unable to accommodate one wheelchair, much less the second wheelchair that her brother will be requiring in the near future.
Jojo, now age 7, also received disheartening news this week. In October of 2017, he was not showing any signs of the heart disease that affects FA sufferers. Last week, his tests showed progression to equal Marissa's level of heart disease. The speed of this progression is frightening, and again, the Graczyk's feel the urgent need to prepare their home for the care and safety of their children.
They have received plans from a contractor for the renovation of their basement, which will make it accessible from the outside, and add two accessible bedrooms and an accessible bathroom.
Funds raised will go entirely to purchasing the materials needed to complete the construction. We have willing contractors lined up who also desire to help the Graczyk's complete this work as soon as possible. As soon as there are funds to purchase materials, construction will begin! And not a moment too soon!
Anything you can do to help will go a long way in easing the monumental burden carried by this Mom and Dad.
Dawn writes about her family's experience at An Uncoordinated Life: https://www.facebook.com/FAmomma/
She might not want me to say this, but I have to tell you- Dawn is incredible, advocating not only for her own hurting children, but also for other heart-broken families who will come after them. She is fierce. She finds her hope in the Lord. Read the things she has to say- her heart is in her words, and both are beautiful. <3
You can learn more about FA by watching this short YouTube video or by visiting: http://www.curefa.org.
Thank you for anything you are able to do to help!
- Sheena Stewart
- NJ Rush
- Gerald Schneider
- Amy Dixon
- Beth Darbe
Organizer and beneficiary
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