Malik Davis

Malik and his twin sister were born 10 weeks premature.  Malik spent 5 months in the NICU, due to many complications from being premature. He had necoritizing enterocolitis , which required an ostomy. After 5 long months, he was discharged home to finally be reunited with his twin sister and parents. He was doing well, however, at 11 months old Malik was diagnosed with Systemic Juvenile Idiopathic Arthritis. Since then, he has been in and out of the hospital, spending only 2 of his 7 birthdays at home.  At 3 years old, he was diagnosed with pulmonary alveolar proteinosis.  Due to this condition, he required oxygen via nasal cannula 24/7. He was discharged home with oxygen and continued to  need to be admitted to the hospital whenever he had an infection or increased oxygen needs.  This condition is progressive and he was evaluated for a lung transplant, but was told he isn't a candidate due to his Juvenile Idiopathic Arthritis. In December 2017, Malik was admitted to the hospital with worsening lung disease. He required high flow oxygen, which he could not be discharged home with.  After many weeks in the hospital, he was transferred to a different hospital to try a lung wash out to help improve his lung function and lower his oxygen needs. The lung wash outs initially helped and after 9 long weeks in the hospital he was discharged home on his regular nasal cannula. In July of 2018 Malik was admitted back into this hospital with increased oxygen needs. His family was told that his lung disease was progressing. Soon after being admitted, he began requiring Bipap 24/7 at maximum settings. His mom was trying everything to be able to take him home on Bipap. Then his condition got worse and he needed to be intubated. The doctors feared they would be unable to extubate him. The decision was made after a few days to try to extubate him and Malik amazed everyone, tolerating his Bipap.  However, the last few weeks since being extubated, his lungs have continued to get worse and his baseline oxygen saturations are now in the 70's-80's. Normal is 95-100. He frequently dips down into the 60's and has gone as low as 5. He is developmentally appropriate and aware when he desats and can't breathe. He panics, and of course wants his parents with him. Both of his parents work full time and have used up all of their vacation and sick time, to be with him in the hospital. Due to his worsening condition his mom has taken FMLA, but will not be paid during her time out. Any donation will greatly help the family with every day expenses during this difficult time, while his mom is out of work. She also has his twin sister at home and a 2 year old son.