I want to tell you a story. A story about a normal 12-year-old boy, who loves to do normal 12-year-old boy things. Things like playing baseball, going to church with his family, swimming with his brothers during the summer, and hanging out with his friends. Jacob, “Jake”, Willoughby is a blonde-haired bundle of energy, who despite the fact that he has been battling the disease, Friedreich’s Ataxia, since 2006; would hardly let you know that anything out of the ordinary was going on with him.
Jake and his dad and mom, Tony and LeAnn Willoughby, began noticing small differences during 2006, such as tripping, staggering, and fatigue. No one, especially Jake, wanted to admit to something being seriously wrong. Jake progressively got worse, with more and more episodes of balance loss. Tony and LeAnn worked tirelessly, taking Jake to many different doctors who subjected him to dozens of tests. Each time, they received much of the same answers… “We can’t find any problems”, or “There’s nothing wrong with Jake”.
Through these excruciating two years, it was amazing and inspiring to witness this family’s faith. There was hardly a Sunday, Sunday night, or Wednesday night that the Willoughby’s were not at Skirum UMC. Jake would be found kneeling at the altar every time an altar call was given. When asked by his mom what he was praying about, he would say the name of a loved one or friend. Never was he worried about praying for himself.
Finally, many prayers were answered in the spring of 2008, when an answer was found. Doctors at Children’s Hospital in Birmingham, AL were able to diagnose Jake with Friedreich’s Ataxia (FA). It is a progressive degenerative neuromuscular disease causing loss of balance, loss of coordination, speech problems, and heart disease. This is a rare form of Muscular Dystrophy. To date, there is no cure for FA. Immediately, through trial and error, different drugs were tested on Jake; some helped, many didn’t. Exhausting trips to California were scheduled so Jake could be part of a group case study for FA. This medication began to help Jake.
Now we arrive in the fall of 2010. The trips to California are finished. The group case study has ended and although the drug which helped Jake is still available; the family’s insurance won’t cover the high cost. The family now waits… and prays. They pray for a miracle and they believe one is on its way. Jake’s mom made the statement just the other day that, “God has got this”!
This is an amazing, true story of heartbreak, hardships, perseverance, courage, strength, and most of all… an awesome, unwavering faith of a blonde haired, blue eyed streak of lighting and his loving family.
Jake and his family are members of Skirum United Methodist Church in Dawson, AL. Their Pastor, Rev. Phillip Battles, has felt led by God to run a marathon in honor of Jake. He will be running in the Rocket City Marathon in Huntsville, AL on Dec. 11, 2010. He has been training with another member of the church and by the grace of God we feel that he will complete this race for Jesus in Jake’s honor.
There is a way others can help this family with Jake’s medication and their ongoing medical expenses by making a monetary donation for this “Race for Jake.” Any amount would be greatly appreciated. Most of all we request your prayers for Jake and his family and for this marathon that God’s love will shine through all of those involved.
Donations can be mailed to Skirum United Methodist Church, 2476 County Road 46, Dawson, AL, 35963. Please include “Race for Jake” on the check memo line. If you will include your address, we will be glad to mail a receipt.