The story of Tiffany
Meet Meryck! Meryck is 12 years old and she loves everything American Girl doll, Mac and Cheese, and naps! Meryck was diagnosed in March 2016 with Neurodegenerative Brain with Iron Accumulation (NBIA) disorder. At this time, she is considered to have Idiopathic NBIA.Â
Meryck’s diagnosis took us all by surprise, because we had several misdiagnosis prior to NBIA. From birth, Meryck was able to meet all of her milestones – but, she always toe-walked. We were assurred that she would eventually grow out of the toe-walking, but as she entered Kindergarten we realized that she worked really hard at walking compared to her peers. After several opinions, Meryck’s 2016 MRI showed abnormalities. So, here we are with a diagnosis of NBIA.Â
In an effort to combat the challenges of dystonia, Meryck has tried a variety of medications. In December 2017, Meryck had a Baclofen pump placed. As the disease progressed, increasing the symptoms of the dystonia we had to explore other, more invasive options. In July 2019, Meryck had a Deep Brain Stimulator placed. Once turned on, we have seen improvement in the dystonia. We’ve found a sweet spot between the Baclofen pump and the DBS to keep her moving and steady, at least for now!
For now, Meryck is a happy go lucky sixth grader!! She loves her dance class and social studies is her favorite academic subject! She has assistance with writing, but does well typing her assignments on her iPad and submits them to her classroom teachers. Her diagnosis has been a challenge for our family; however, it has seriously shifted our thinking. The dystonia has caused some physical limitations, so we are always actively seeking ways to make sure that Meryck is included – in everything!! She LOVES to snow ski (and, we’ve been blessed to find some great places for adaptive skiing)!!
While we do not know what the future holds for us, we will continue to navigate NBIA and focus on finding a cure!
*Find others with NBIA on RareConnect, the online platform for people affected by rare diseasesÂ
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