Our beautiful daughter, Delaney Lynn, was born on March 20, 2003.  Delaney’s development was normal or above normal until about the age of 4 ½. This quote, “It’s the little things that make life BIG,” describes Delaney perfectly.  It didn’t take much to make Delaney happy.  Some of Delaney’s favorite things were: a trip to the mall or the local bookstore, Sheetz for a Slushee, Rita’s Ice for a mango gelati, a fudge stuffed cookie at Dairy Queen, or dinner at Chic-fil-A. Delaney LOVED food!!!!  She also enjoyed going to the local county fair each summer.  She loved spending time at the barn and enjoyed riding her favorite horse, Foalie.  Delaney loved school, riding the bus, and listening to her iPod. Delaney loved our yearly trips to the beach. She enjoyed swimming and boogie boarding in the ocean, looking for seashells and building sand castles.

Delaney loved music, and on the right day at the right time she would sing to us Taylor Swift, High School Musical, One Direction and anything else she loved. The singing was loud, slightly off-key, but sung from her heart.

At 4 ½, it was like Delaney had been struck with a bolt of lightning and the slow downward spiral began. OCD, anxiety, depression, insomnia and vision issues were the initial symptoms.  Delaney soon began to have learning difficulties and social problems with her friends and classmates. Her coordination decreased, behavior and sleep became more problematic and she struggled both at home and school. Right before our eyes we watched our child slowly being robbed of her life.

We spent many years searching for an answer to all of the declines.  Finally after extensive genetic testing, Delaney was diagnosed with juvenile Batten disease on June 9^th, 2015. We were devastated and had so many unanswered questions. How will we handle the decline and eventual loss of our daughter? How will we handle all the medical needs, accessibility needs in our tiny, older home? How will we transport her to the places she needs to go once she is wheelchair bound? How will we care for her when she no longer is able to attend school? The questions seemed endless. We put our trust in God and prayed for wisdom, guidance and answers from Him. Although it wasn’t always easy, God provided and has taken care of our needs in ways that only He can.  “We are blessed”.

On January 21, 2019, Delaney lost her battle with juvenile Batten disease.  Through Delaney’s illness and struggles we have seen so much love, unity and compassion in many different ways. We have seen God’s love through the kindness that people have extended to our family. We have seen God unifying our community as people have rallied around our family during Delaney’s illness, her passing and first birthday in Heaven. We have seen God’s compassion in all those who have prayed and supported us in so many incredible ways.

God has a purpose for everyone He places on earth. We have often wondered why God put Delaney on this earth for only 15 years. Why did she suffer so much, and why was she taken away so early? We won’t know the answer for sure until we get to Heaven, but we feel Delaney’s purpose was to remind us all how we should live our lives each day.  We need to love unconditionally, strengthen each other through our trials and troubles and show compassion to those around us.