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Around Cornerstone: News

Facing Friedreich's Ataxia: Jasmine Miller's Story of Hope

Jasmine Miller’s remarkable life is noticeably filled with hope and grounded by her faith, and we are so honored to be able to share her journey with you. 

Searching for Answers 

Her story began rather abruptly in January 2019 while on a family vacation to Disney World. Jasmine, a sixth-grade student at Cornerstone, became increasingly unsteady as she walked. Her parents, Amy and Shea Miller, noticed additional symptoms, including unusual arm movements. After initial testing, she was diagnosed with Marfan Syndrome, although her parents felt that disease differed too much from Jasmine’s symptoms.   

So they began an exhaustive search to find answers. Through a series of events, orchestrated as only God could do, the Miller family was connected with David Lynch, M.D., Ph.D., an attending neurologist in the Division of Neurology at Children's Hospital of Philadelphia and director of the Friedreich's Ataxia Program.   

A diagnosis of Friedreich’s Ataxia requires a careful clinical examination, which includes a medical history and a thorough physical exam, in particular looking for balance difficulty, loss of reflexes, and signs of neurological problems. After enduring endless rounds of testing and an immense season of waiting, Jasmine finally had her diagnosis, Friedreich's Ataxia.   

Facing the Diagnosis of Friedreich’s Ataxia

Friedreich's Ataxia (also called FA) is a rare, inherited disease that causes progressive nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia). It’s extremely rare, affecting roughly one in 50,000 people worldwide. Individuals with Friedreich's Ataxia have two altered copies of the frataxin gene, so they are unable to make the normal amount or type of frataxin. People with only one altered copy of the gene are called “carriers” — they have no symptoms of the disorder but can pass FA along to their children. Amy and Shea Miller are both carriers.  

“When my parents first told me, I was heartbroken,” said Jasmine. “I broke down in tears. I was so angry with God.” 

She was also understandably overwhelmed with countless questions, like, “Why would He give me this disease at 10 years old? Why were the symptoms just now showing up?  I’ve been so healthy and normal until now, why me?” Jasmine’s father adds that he also wasn’t ready to accept it.  

Clinical Trials

In the early days of Jasmine’s diagnosis, Amy and Shea were surrounded by a whole new world of medical terms as they learned how to best help their daughter adjust to a new normal. Jasmine was offered an opportunity to be part of an observational clinical trial. During the trial, doctors monitor how FA progresses in children 8 to 12 years of age as well as how they respond to physical therapy long term. 

A Life Filled with Hope

The Lord has clearly given Jasmine a sense of hope and peace. Jasmine explains that today she’s in a much better place than she was after the initial diagnosis.  

“I had a lot of plans, I still have a lot of plans,” she said. “I know Jesus is with me, and I know I can trust Him. My plan may just look different than I thought it would.”     

The plans Jasmine mentions began when she was just three years old. She has always dreamed of being a pediatric physician's assistant and enjoys combing through the bookshelves of Goodwill in search of medical books; she’s collected 19 so far.  


Bringing Awareness

One of the biggest challenges for individuals with FA is that since it is such a rare disease, most people are usually unfamiliar with it and do not know how to help.  

After much brainstorming on how to bring awareness, Jasmine was so excited to share with us that she is in the initial stages of establishing a YouTube channel! She’s calling it “Awesome Ataxia Kids,” and she hopes to be able to connect with others who also share this disease.   

Her mom, Amy, added, “God opened a door we never expected Him to open, but Jasmine is now able to touch more lives and have more access to people than she ever has before.”    

Community

In the time since the diagnosis, the Miller family has drawn strength and support from their incredible community of friends and family. Jasmine would like to particularly thank Mrs. Lochamy for her kindness as well as the group of sixth-grade girls at Cornerstone for their love and support as she adjusts to life with Friedreich's Ataxia. 

Looking Forward

One of the most striking aspects of the Miller family is their positive perspective and outlook on what lies ahead. When asked to give one piece of advice to someone dealing with a tough medical diagnosis, Jasmine smiled from ear to ear.

“I’d tell them whatever you’re going through, God is in charge, and He will help you if you trust Him,” she said. 

                                        

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.

        Philippians 4:8-9

 

You may also be interested in watching The Ataxian- An award-winning documentary of one man’s fight against a life threatening disease