David’s memory was put up in the living room. After the birth of the triplets, he was moved into their dad’s study. As the children grew, he was relegated to the cupboard deep inside. He heard the kids coo, crawl, walk and then speak their first words. David wanted to see his sisters and brother play. He wished to hear his mother’s voice. No one had said his name for the past 3 years. Though he wanted it to be this way, he still felt a sense of loss. Had he survived, he would have been 5 years old.
It was cloudy when Macie returned home. She had been little more than a machine for the past 2 years. Her husband sighed, reaching out to take her hat and coat. All of a sudden, a fierce gust of wind shook their living room. The wind blew through his study, scattering his papers and bringing down a doll, which he had hidden from her. He did not hear the doll fall, but Macie did. She rushed over and picked it up, her eyes watering. She looked at his stunned face and sobbed for the first time in 2 years.
You are a new parent in the maternity ward. You watch your healthy newborn sleeping in peace. Contentedly, you close your eyes. You watch her grow and thrive over the months. She attains her head balance and crawls on time. Next, you proceed to feed her semi-solid and solid food. She throws up. Not one day, but every day. Your doctor tells you to force-feed, but it is of no use. That is when you realize that something is wrong.
You wonder if it is reflux or some other infection. You are worried, putting your child through various medical tests. Your child progresses to her second year. But, you see few signs of growth or development. That is when you are suggested to go through an MRI and a genetic test. You are devastated when the doctors say that she has the LEIGH SYNDROME. According to US National Library of Medicine, “Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within two to three years, usually due to respiratory failure.” The sad part is that the Leigh’s Syndrome has no cure and most of the pediatricians have not heard about it. It is a rare disease.
All these are events that happened in my friend’s life. He daughter has regressed over the course of time. She is now two and a half years old and fighting with this disease every day. Please go through my friend’s blog and support her in any way you can. Do spread awareness of this dangerous and rare syndrome. Do please pray for Aadya and all the kids who have been diagnosed with the Leigh Syndrome. Here is Aadya’s blog.