Meet Natalie Strong, a mom on a mission to help her son live his best life in spite of his rare diagnosis. She's hoping to make a difference for others struggling with this disease and knows that God is still in control today, tomorrow, and always.
What led you to want to fundraise?
Our world came to a screeching halt almost a year ago. Our very active 5 year old son (now 6), Silas, started showing some persistent symptoms that I knew were not due to a typical virus. The world was his jungle gym, but now, all of a sudden, he wanted to be on the couch 95% of the day. He couldn't stand for more than 1-2 minutes. He once ran wherever he went, but that became a slow shuffle that would usually end up in a skinned knee from tripping over his feet. He couldn't lift his head off his pillow and had to roll to get out of bed. He started falling a lot more, couldn't climb in the car, couldn't straighten his arms, and couldn't go from standing to sitting or vice versa. Then came the fevers and rashes. Hearing the words "Your son has Juvenile Dermatomyositis" was life changing. Rare disease was now a part of our life, a chronic disease, with no cure, and minimal research. Approximately 2-4 children in a million are diagnosed with Juvenile Dermatomyositis each year, which means that 3,000-5,000 children in the US have this.
Silas was admitted to the hospital immediately for 3 days to start infusions. Things got better, but then they got worse. Another 2 week hospital stay came shortly after that first treatment. His oxygen levels dropped due to his breathing muscles weakening, which led to a need to be put on oxygen, and he began to have difficulty swallowing food and liquids. We are so very thankful for an amazing doctor who was able to figure out that Silas needed more aggressive treatments and added medications. Slowly, things starting leveling out. He has been able to get off of oxygen, his arms can straighten again, and he is as active as a typical 6 year old boy. He will still need to continue medication. For how long? We don't know. It's a slow weaning process, and we won't know how his little body will adapt on it's own without the medication. As a parent, I hope and pray that remission will come instead of a flare.
Once Silas started to show signs of less disease activity, I knew I wanted to help. We are a small population being affected by JM, so I feel very fortunate for the Cure JM Foundation that funds research, raises awareness, and supports families. This amazing foundation is funded solely by donations. The amount of kids affected by JM is so small that they miss out on any government or business funding.
What have learned about yourself and others from parenting you son and walking through this with him?
Having a child with a rare disease has taught me more than I ever thought was possible. I have learned my son is a warrior. My biggest real life superhero. I have seen him fight this daily...whether through struggles of the disease itself, or the side effects of the medication. As much as it breaks my mama heart, I just watch him take it all in stride. He is amazing! He just rolls with the punches and keeps going.
I have learned that I am not as strong as I thought I was....and that it's ok. Because I serve a God who picks me up and gives me strength to face the reality in our lives.
I have learned (and am still learning) to give up control. As a mom, it is so easy to want to fix everything in our kids' lives; to make it better for them. I had to fully surrender this to God. There was absolutely nothing I could do in my power to take this away from Silas. I had to give up that control and trust the situation to the One who created my child and loves him more than I ever could imagine. That is one of the hardest things I have ever done, but there was such a peace that came along with it.
I have learned that kindness is one of the most important qualities we can teach. My son has gone through many changes with the disease and the side effects of the medication. On the outside, you may not even know he is fighting such a big battle in his little body.
If you could tell the world one thing about having a child with a rare medical diagnosis, what would you say?
If I could tell the world one thing about having a child with a rare disease, it would be to hang on to hope. There is always hope...even in the worst possible diagnosis. In Silas's rare disease, we hope for remission. We hope for a cure. We hope for better treatments with less side effects.
How have you seen the Lord at work through all of this?
I have seen the Lord's hand in this from the very beginning. There are some cases of JM that take years to get a correct diagnosis. We saw 2 doctors within a month before getting referred to the place Silas needed to be, and he was diagnosed instantly. He has a wonderful doctor who we are all so thankful for.
We have gained a new family through Silas's diagnosis. I have become friends with other moms all around the world with kids who have JDM. We check in on each other, show support, and share stories. It has made a very isolating situation seem almost normal.
I have seen the Lord work in Silas's entire journey. Silas has responded so well to medication! There have been side effects and bumps in the road, but I know that God has been with us every step of the way and will continue to be until the end. We have gained a trust in Him that we have never had before. To know that no matter the outcome, He will never leave our sides.
What advice to have for parents with children who have just received a similar diagnosis?
If I were to give any advice to parents who have children that have just received a similar diagnosis, it would be to keep hope. Never stop advocating for your child. You are the one who knows them the best. Find families going through the same thing. You will be amazed at how much comfort and reassurance you can find in sharing a similar journey. Make sure you have a knowledgable doctor that you trust. We have been so fortunate to receive a doctor who takes the time to answer all our questions, help with paperwork, and shows she cares in so many different ways. And above all, to trust in our Creator who knows all outcomes.
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