We are so very thankful for your consideration in blessing our family this season!
We are a family of six. My husband Josh and I have four children, Braylon(11), Kallie (8), Samara (6), and Josiah (almost 4). We moved to Michigan in 2015 and had our youngest in 2017. He was a couple months old when we realized he may not be able to see. After many months of testing, and little answer, we were left with the unknown fear that our blind and severely developmentally delayed child may have a serious health concern. When he was 7 months old he started seizing up to 45 times a day. Yes 45. A year passed and his development stayed at a 6 week old child’s. We got a diagnosis of CDKL5.
CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. Josiah is blind, non verbal, non mobile, has GI, heart & lung problems. He cannot eat solids and seizes up to 95 times a day. Life with Josiah may seem like a stressful misfortune, but it is just the opposite. We all feel immensely blessed by him each and every day. Although he can not communicate with us and very rarely smiles, he is the most loving boy. He’s constantly smothered with kisses and snuggled with warm arms. We cherish each day with him because he will likely not live a long life. Gods shown his faithfulness, steadfast love, and unending grace through Josiah And only revealed more of himself through our blessing of suffering well with him. With 2020 putting a huge damper on our make a wish trip planned, and conference to see our other CDKL5 family, being blessed this Christmas is so incredibly thoughtful! Our family thanks y’all so much!