Shelly Holbrook
ECB Publishing, Inc.
Social media has been abuzz about a local child, who has experienced a major health crisis this winter. Lily Ann Matthews is a nine-year-old little girl who has faced extremely difficult health challenges in her short life. She was born with a rare disorder called CHIME syndrome. This syndrome involves many complicated health issues, but for Lily Ann, it includes epilepsy, cleft lip and palate, kidney issues, hearing loss, and extremely sensitive skin irritations. Danielle Matthews, Lily Ann's mother, shares that Lily Ann has had as many as 75 to 100 seizures a day. Thankfully, Lily Ann's epilepsy has been controlled in more recent years, and she hasn't had a seizure in nearly two years. On Nov. 21, an oral surgery was scheduled for Lily Ann to have a bone grafted in the front of her mouth. However, five teeth had to be removed instead, and braces were put in. Just a few days after this procedure, Lily Ann became extremely lethargic and was struggling to breathe. She was taken to the emergency room where her oxygen level was 71 percent. She was admitted to the hospital immediately and diagnosed with double pneumonia, acidosis and sepsis infections and human metapneumovirus. Doctors told Lily Ann's family that they were doing and had done everything they could do. Now, it was time for Lily Ann to fight. Doctors intubated Lily Ann and placed her in a medically induced coma. Danielle shares how dark those days were for her, and how traumatized she was at the thought of her little girl's journey ending after just nine years.Danielle recalls on Friday, Dec. 3, their Jefferson County community held a prayer vigil, and on Saturday, Dec. 4, Lily Ann began to make significant improvement. Lily Ann is nonverbal, but woke up and was signing “I love you” to her family while still on the ventilator. Danielle says that in spite of the fact that her daughter has faced so many challenges, she still pursues life with such a joy and gratitude to be alive, that Lily Ann ends up teaching those around her incredibly meaningful life lessons. Lily Ann woke up on a ventilator, and was simply happy to still be alive – even though she was hurting and physically weak and facing countless disadvantages. While most would likely be tempted to wallow in self pity, she chose to embrace life and spread joy and gratitude from the moment she regained consciousness. She reached out to hospital nurses and doctors to give them hugs. The medical professionals who were unsure Lily Ann could pull through this, were now on the receiving end of her fierce bravery and gratitude for life.Danielle and the rest of Lily Ann's family would like to extend their thanks for the support, prayers and encouragement that they have received from the Madison and Jefferson County communities. Danielle learned Lily Ann would be different while she was pregnant with her, and doctors encouraged her to terminate the pregnancy because the child would have no quality of life. But she says today, all she can think about is everything she would be missing if she would have aborted Lily Ann. She has watched her daughter fight and embrace life with an unmatched zeal, and each day Lily Ann shows those around her how to find joy in the face of hard and dark days. Perhaps Lily Ann's story could help us all gain some perspective on our own situations and valleys we are going through, and choose to be brave and share joy even in the midst of our pain and struggles.
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