An adaptive bike, medical, and travel expenses

Arlee was recently diagnosed with Friedreich's Ataxia. This is a rare debilitating, life-shortening,degenerative, neuromuscular disorder. It can cause scoliosis, cardiomyopathy (heart disease), muscle ataxia (losing the ability to walk), nerve damage and a few other things. She will require follow up visits by a lot of specialist for the rest of her life. There are only about 5000 people with this diagnosis in the US, approx: 20,000 worldwide.

Friedreich's ataxia currently does not have a cure or treatment. However, there are many clinical trials that show promising results to slow the progression. We do not currently know exactly how fast or severe this will be for Arlee. God willing, Arlee will remain stable for as long as possible. Please pray that her symptoms progress slowly.

So here is what we are needing:

1. Prayers for medical advancements (specifically there is a treatment waiting approval from the FDA so that’s the primary prayer)

2. Prayers for safe travels to all of the doctors visits. Prayers for little sis and brother that they are strong through this process and we find a good balance for our family.

3.Share! We want the world to know about FA!

#friedrichsataxia

4. If you feel moved to help in a financial way we will use the funds for ..

-A bike for Arlee. She needs an adaptive e-bike. She has never been able to ride due to her muscle strength,ataxia, and fatigue. This bike will allow her to ride with her sister,friends and family.

- Any medical equipment/ medicine not covered by insurance (Praise God we have good insurance and grants for clinical trials! )

-Funds to bring sister and brother to Philadelphia or other states where clinical trials are happening. We will be at these hospitals multiple times in the next few years.

God is good all the time and he alone can give us peace and joy through the trials we face!