Miracles for Emily: Help Us Send Emily to NAPA

Hello everyone, my name is Scottlyn and I am an Aunt to the most precious, beautiful, loving three year old, Emily. I have thought a million times what I would say about Emily's story and the one word that keeps coming to my mind is gratitude. From the outside looking in you may think, grateful? I choose, and my family chooses each day to stand on the side of gratitude. We are grateful for family that has wept with us, prayed for us, and supported Emily at each step. Grateful for grandparents and an angel Papa, who have literally given everything to help Emily. Grateful for churches across the state who have prayed tirelessly for our sweet girl. Grateful for Kristen and Jason, Emily's parents, who never give up, keep pushing, and have fought for Emily. Grateful for a Savior, who has a perfect plan for Emily's life. We stand firm that God is Jehovah-Rapha, the Lord who heals and Jehovah-Jireh the Lord who provides. We stand in faith.

Putting words to Emily's journey from the last two years is hard. Hard to relive. But also important to see how far Emily has come. And while my words will not do justice to the experience Kristen, Jason, and Emily have lived, I hope you will see a family that loves Emily more than you could imagine.

Shortly before Emily's first birthday, Kristen noticed something different about her active, bubbly, talkative baby. Kristen quickly took her to the doctor where they suggested it was probably an ear infection.. Yet, as time went on Kristen and Jason agreed something was different. Emily was lethargic, not the active child she was before. Several doctors dismissed them. Kristen knew Emily was not okay. Emily began having fevers every four weeks to the day. Finally, a trusted pediatrician agreed with Kristen and sent her for bloodwork. The results came back and Emily had an inflammation (SED) level of 83. A normal child's level would not exceed 25. From there, Emily was referred to Greenville. During this time, Emily slowly began to lose her ability to walk, crawl, and talk. Greenville Hospital provided no answers. One particular doctor slammed the door and said this was not their problem to figure out. However, there was one particular doctor that tried to help us find answers and gave Kristen and Jason the courage to pursue other options. Frustrated and wanting answers, Jason picked Emily and Kristen up and took them to the emergency room at Duke Children's Hospital. Duke provided Emily with a team to look at her case. There she had a spinal tap and MRI scans. The team at Duke discovered that Emily had inflammation around her brain during her fever episodes. A blow to our hearts, but it pushed us harder to get on our knees and pray. Emily, Kristen, and Jason both had gene testing performed. A prayer was answered when Emily was accepted into the Undiagnosed Disease Network Program at the Washington University Hospital. After rounds of testing and waiting, Kristen, Jason, and Emily received the news that they believed Emily had Autosomal Recessive Spastic Paraplegia-56.

Autosomal Recessive Spastic Paraplegia-56 is a rare autosomal recessive disorder, caused by homozygous or compound heterozygous mutations in the CYP2U1 gene, located on chromosome 4. There are only 32 ever documented cases of this disorder in the world. Emily, would be number 33. And while our hearts are broken, we also rejoice. We believe this will be an even greater portion to Emily's testimony. Nothing is too big for our healer, Jehovah-Rapha, and we stand firm that a condition that only 32 people in history have is NOT too big for our God.

Emily's story is just getting started and we are excited to share that she was recently accepted into NAPA. NAPA, an intensive therapy program, which includes combinations of occupational, physical, & speech therapy, are customized for each child based on their needs and goals. This program is three weeks long, and Emily has been chosen to participate in Austin, Texas. Many children wait years to be selected and Emily's selection is an answered prayer.

This program is extremely expensive costing hundreds of dollars a day, not including housing, travel, and meals. Many children gain more progress towards their goals in three weeks of intensive therapy with NAPA than they do in a whole 12 months of ongoing traditional therapy. This opportunity could be life changing for Emily and we will do whatever it takes to make sure she has the ability to attend. We do not want any financial burden to stop Emily from attending NAPA, and we are asking for your help.

So, we ask you to join us and pray! Pray for our little girl who is one in a billion. Pray for Emily as she works every week in speech, physical therapy, occupational therapy, and water therapy and as she attends the NAPA intensive in April. We ask that if you are able to give, please know how eternally grateful we are. If you are not able to give, please share and pray with us. Sending Emily to NAPA could allow for Emily to regain what has been lost and we will not stop advocating for her. Thank you for your contributions, but most importantly your prayers. God bless.