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FARAFARA Cure FA

Marissa Graczyk

MarissaGraczykName: Marissa Graczyk

Age: 13

Where do you call home? Centerview, MO. We live about 45 minutes east of Kansas City, on a small farm.

Education: I am homeschooled, so we don’t really have grades. If I went to school, I’d probably be in 7th grade.

Who do you live with? I live with my parents and 5 siblings. I have 2 indoor cats; 3 outdoor cats; 2 dogs; 4 goats; 2 pigs; and many chickens, geese and ducks.

What's a typical day for you? Everyday I read my Bible and pray. I do my school lessons and afterward I have free time to play with my dogs and cats or spend time reading or on my tablet. I enjoy reading romantic historical fiction and playing Minecraft. I am also in charge of doing the family laundry. With 6 kids in the family, there is always laundry going.

How long have you known you are living with FA? One year.

Are there any others with FA in your family? Yes; my 7 year old brother, JoJo.

What do you like to do to stay active and what type of exercises work for you to stay strong? I enjoy doing Just Dance with the Wii. I also enjoy short walks around the farm when the weather is nice. Our library is starting a weekly yoga class, and I’m excited to try that with my mom. 

 MarissaGraczyk2Do you have any hobbies or special interests? I enjoy studying microbiology and epidemiology.

When FA gets you down, what do you think/do to feel better? I hug my mom, because I’m a hugger. I like squeezing my stress ball, hot baths with aromatherapy, reading to help me feel better.

Tell us a little more about you...I wish people were more aware of FA and took time to consider the needs and feelings of others. A year ago I could walk by myself but I got pneumonia and lost the ability to walk. I can walk now, but I fall a lot more and I get very tired so when we leave, I use my wheelchair. People often jump in front of me or get frustrated because I’m in their way. People also act like I’m not smart because of my wheelchair and slurred speech. Sometimes they will ask my parents, “What’s wrong with her?” and not talk to me even though I’m right there. I wish they understood that I am still a very capable and intelligent person, and I wish they would speak to me as if I am.

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Let's chat with Dawn Graczyk; mother of Marissa (13) and JoJo (7) and their four siblings who do not have FA.

What quality or trait has been brought out the most in Marissa despite living with FA? Sadly, I had not considered Marissa to be a strong girl. We have always been an active family, and I was raised with a high value on strength and hard work. Marissa always seemed weak. While in Okinawa, it was she, not her younger siblings that would need to be carried on hikes. The summer before her diagnosis, I have a very clear and painful memory of working in the garden on our farm. Everyone was working to pull weeds and Marissa was lying down crying that she could not handle another minute. I became frustrated and told her that if she couldn’t handle more than she had, she needed to work on getting stronger.

Now it is clear that Marissa is one of the strongest people I will ever know. She has faced so many challenges and does it with more grace and strength than I see many adults; more than I ever could. Despite the challenges she remains kind; concerned and loving to others; and determined. Before we knew FA, I had no idea the depth of her strength.

What did you find was the best way to discuss the diagnosis with her? Our situation was a bit different than many. I had been telling doctors for 8 years something was wrong and being pushed aside. Even during her hospitalization, the doctors continued to insist her condition was acute and she would improve. I pushed for, and was granted genetic testing. I called in the days leading up to our appointment, hoping if the test was positive (I truly knew it would be) that they would tell me apart from Marissa. They did not. So she received the news from the doctor right along with me.

God prepared Marissa in many ways, one of them being her interest in rare diseases. She had so many questions about FA and asked for books or websites. I was thankful there were no books and limited her access to information online. Instead, I promised her I’d answer any question she had as completely and honestly as I could. God was gracious and provided opportunities, little by little, for questions to arise and me to answer. Some have been harder than others, but God has kept a gentle hand on us both and although the road ahead can look very scary, we both are at peace.

MarissaGraczyk3What advice would you give to others? This is something I consider often. I wish there was a way I could compose a letter to parents who are new to this diagnosis. I was uniquely prepared for this because though I’ve been homeschooling the children for 7 years, I have my nursing degree and it made the initial days easier to navigate.

First, let yourself grieve. Scream and cry and break things if you need to. I was so afraid to let anyone see my cry, but once the kids were in bed I’d be up for hours and then awake by 4 am. One day I was talking to my grandma and she said, “You have to let yourself grieve. You lost something; it hurts. It is ok to cry and its ok for the kids to know you cry.” I don’t know why but I just had never considered that it was acceptable to grieve. It is ok. You need to grieve.

Second, it may not feel like it but you will feel happy again. Your child has so much life left. And though I doubted it as well, things will settle in and feel normal. It’s a new normal, it’s not the same as most families, but its YOUR normal. And you can be happy here.

Third, you have a choice to make. I never considered that I had a choice, but I see now I did. You can choose to quit and let bitterness take hold of your heart, or you can determine to live life to the fullest and teach your child to love and embrace the moments you have. It really is a choice and it can be hard. You will hear people complain about life in ways that seem petty and you will want to scream. You will spend hours fighting insurance and coordinating appointments and feel angry and unjustly treated. Remember, it is absolutely ok to acknowledge those feelings but don’t stay there. You were given this road for a reason. You are strong enough. And if you resist the urge toward bitterness, you will find this path has a beautiful and enchanting scenery all its own.

Finally, not everyone wants to be involved in advocacy. For me it was essential. I’m a fighter and for me the most frustrating part of this was he moments when I had nothing to do; nothing to fight. I’ve found advocacy and community engagement to be very therapeutic. I’ve determined that if we have to do this, we’ll leave the road better for the next person.

Many people do not wish to be involved at that level right away, or ever. That’s ok, but don’t fall into a trap of isolation. I have met so many “special needs” moms this year and nearly all report feeling isolated and lonely. You need people. You need support and someone to give you a break or share a cup of coffee. As hard as it is, find groups, friends, make time. If you can’t find FA support groups look for groups through NAF.

How has Marissa inspired your life? Marissa inspires me everyday to be a better person. I see her positivity, joy, and faith in spite of her challenges, and I am more determined than I’ve ever been to remain joyful and to seek joy in any situation.

How have you been encouraged for Marissa's future living life with FA? We honestly still find the future a bit scary. I try not to look too far ahead. Where we are now is good. We have each other. We have God. I am hopeful that there will be advancements in treatments, or a cure for both my children. But ultimately our greatest hope is found in knowing one day we'll be together in heaven and everyone will run without weariness or falling. We’ve also been greatly encouraged through our FA friendships with people like Kyle Bryant and Tom and Paula Hook (FA Woodstock) who have shown my husband and I how much life our kids have to live and how to embrace the moments we are given, one at a time, right here and right now. My children can do amazing things!

What is one way FA has POSITIVELY affected your life? The pain of this experience has led me to pursue God with more passion and honesty than ever before. I’ve grown closer to God, stronger in my faith, and closer to my family than I think I could have otherwise. Life is more beautiful now. I see blessings more readily and feel joy more intensely. While there is a part of me that wishes greatly we had not had these genetics, the journey has been a blessing in many ways.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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