Feb 19, 2022 Latest post:
Apr 30, 2022
Jayde is by far one of the most caring young ladies I know. She is the type to give away the last that she has to make sure someone else is taken care of... she had just graduated high school and was in her first semester of college. Loved hanging out at the beach, of course with her boyfriend never with us parents; a typical teen. Then November 23rd she went to the hospital with a difficult time breathing. She finds out she has a collapsed right lung and has to have emergency chest tube placed. She is admited and then a few days later we find out she possibly has Lymphangioleiomyomatosis (short name LAM), which could be related to the angiomyolypoma (AML) she had on her kidney 2 years ago. She the has both lungs collapse by day 4 in the hospital. She was transferred up to UF in Gainesville, FL where ther is a specialist for LAM disease, which is 2.5 hours from home. LAM disease is a very rare disease effecting 3-5 out of a million and it almost exclusively effects women. There is no cure for LAM disease although in 2015 the FDA approved a drug called Sirolimus to slow the progression.
Jayde has spent the last 3 months in the hospital with her mom by her side every day, except for one week in January when she was released home from hospital. Not knowing that would be short lived she was back in hospital with difficulty breathing. She is the strongest and most brave girl enduring many procedures and surgeries. We pray her lungs will soon stay inflated and leak free so she can once again come home and start treatment on the medication.