Welcome to Families For Friedreich's Ataxia!

Becca and Myles Lange are the proud parents of three beautiful children - Arlee, Annie, and Abel. Devastatingly, their oldest daughter Arlee and their son Abel have both been diagnosed with FA. 

"When we first received the diagnosis of Friedreich's Ataxia our hearts were broken that our children would have many struggles, pain and suffering. As we learned more about the disease and the prognosis for our children all of the current research suggested that their lives would be shortened. How much, it is hard to say because no one knows and the research is evolving so we pray and hold on to hope.  However, for our daughter each time we visit the doctor her blood work shows progression and her heart is showing signs of distress. With these new findings we can't help but think, what if the research is moving too slowly. She is showing signs of disease progression monthly and her fatigue is increasing. Our constant thoughts are how much time is left and how are we spending that time? "

As the disease is progressing Arlee's ataxia has increased, requiring her to use her walker and wheelchair more frequently due to safety. In order to make their home more accessible for their children, the Lange family needs to build a wheelchair ramp into their home. This project required much more work that initially thought to allow safe entrance and a functional and accessible home. 

"Thanks to the generous donations, Families For FA was able to cover many of these costs and by 2025 we will be able to enjoy our new accessible entryway and kitchen" 

In February 2024, Arlee was becoming very fatigued after school and was not able to participate in daily family activities. Soon, it was discovered that Arlee's blood tests that measured for disease were both significantly increased. Becca and Myles knew there was nothing they could do medically to slow the progression of the disease.

 "After hearing these results, we just wanted to be able to spend more time with her, time where she was not exhausted and too tired to play.

"To answer the second question -How are we spending our time?- the answer was school. Our daughter spent most of her time and energy at school. She loved her friends and teacher but for Arlee school was so hard! When she came home she was exhausted and wanted to rest. We felt convicted and jealous that she was spending her time and energy away from us and on something she didn't enjoy. What could we do? We thought about keeping her home but we still needed two incomes. We lamented and prayed and the very next day our prayers were answered. There is no cure yet, but we received a gift that would allow me to stop working so that we could homeschool all of our kids and spend more time together. Good quality time. Time that was not rushed or filled with anxiety or pressure.  Families For FA  has given our family time together, peace, hope, and financial security. Since they have begun homeschooling, Arlee has been able to conserve her energy and sleep when she needs. Our family has been able to spend many more hours of quality time together, Arlee is enjoying her education more, and both blood tests, which show cardiac stress levels, have decreased by over 50%. There are no words to show our gratitude to Families For FA and all the individuals who have donated.  We have been beyond blessed by the generosity of this organization and we are  forever grateful. "