Diagnosis: MELAS (Mitochondrial Encephalomyopathy lactic acidosis, and stroke-like episodes)
Evan was born from a normal pregnancy, met all his developmental milestones up until 2 years old. It was noticed that Evan had a slight speech delay at this time. At 2 ½ years old, Evan began to walk slower with his feet outturned and had a decreased appetite. He began to lose weight and was hospitalized with constipation in August last year. After more difficulty walking and daily vomiting, Evan saw a neurologist and GI doctor. He was hospitalized three more times for weakness and weight loss and had an NG tube placed in the Fall of 2016. He has gradually demonstrated weakness in his neck, arm, and leg muscles. He has such a positive, sweet spirit though and brings smiles to everyone he encounters. He was in the hospital from 12/27/16-2/17/17 with Pneumonia with most of the time spent in the ICU on a breathing machine. There were nurses not even assigned to Evan who had heard about what a sweet boy Evan was and would come to see him. We are very blessed to have Evan in our lives but were unprepared with how rapid his physical decline was and the financial burden it has taken on our family. We have depleted our savings account and adjusted our lifestyle in order to ensure that Evan has everything he needs for his care. His sisters love playing with Evan and reading him books. Thank you for taking time to consider Evan for Kenna’s Kids.
Evan has weakness in his neck, arms, and legs and is currently not able to stand. He has an NG tube for nutrition and is on a mitochondrial vitamin cocktail. He is getting nursing care, PT, OT, and Speech at home. Evan is on a Bipap machine with oxygen at night and gets breathing treatments five times a day. He also uses the CPT vest and cough assist with suctioning to help keep his lungs clear. Evan has weakness on t he left side of his body.
Prognosis: There is currently not a cure for MELAS. No specific treatment for MELAS exists. The average observed age at death in the affected MELAS patient is 34.5. The estimated overall median survival time based on fully symptomatic individuals was 16.9 years from onset of focal neurologic disease.
Day in the Life: Evan’s day begins with a 6:00 am NG tube feeding with a breathing treatment of Sodium Chloride and Albuterol, following by nose and mouth suctioning. He gets water at 8 am and the CPT vest at 9 am with the cough assist and suctioning. At 10 am, Evan gets another tube feeding with vitamins, Albuterol breathing treatment, and water. At 12:30, Evan has water, followed by a 2 pm tube feeding with his breathing treatment, vitamins, and water again. Evan gets one ounce of water at 4 pm, followed by two ounces of Juicing (fruits and vegetables) at 4:30 pm. He then gets a 6 pm feeding with vitamins and breathing treatment, followed by suctioning of his nose and mouth. Evan gets more water at 8 pm and the CPT vest for 20 minutes with the cough assist and suctioning at 9 pm. He has his last feeding of the day at 10 pm with breathing treatments with Sodium Chloride and Albuterol.