Alayna Leigh Jacobs (Lani, 6) of Ripley (above before ROHHAD), Tennessee, bacame sick a month before her 3rd birthday. Prior to this, she was a happy, healthy, "normal" kid. The day she became sick, we thought she was having an asthma attack. We took her to a local hospital, where we were told it was probably an asthma attack plus maybe something viral. They told us to follow up with her primary care.
The next day we took her in to discover her temperature was around 87 degrees. They sent her to the local hospital to be flown out to Le Bonheur Children's Hospital in Memphis, TN, almost 2 hours away. When we finally got there we were met by 2 chaplains who took us to the trauma unit. They had to intubate her. They had no idea what was wrong. They told us to call in our family, and that she probably wouldn't make it through the night. She shocked everyone and came off the vent. However, every time she would fall asleep she would stop breathing. They intubated her again, and did some research.
They came back in her ICU room with something printed from the internet and told us that she had all of the symptoms of ROHHAD. They had never seen it before. Neither had St. Jude Children's hospital. After finding this out, they continued running tests on her to discover that she had cancerous tumors. We were sent over to St. Jude to have her cancer removed. After around 3 months, we came home. Since then, she has slowly gotten worse. She had a pacemaker put in to keep her heart from stopping, a gtube to feed her, and a trach and full time ventilator to make her breath. She has seizures, can no longer walk or eat, swelling in her brain, and several other issues.
She was placed on hospice and given 6 months to live. That has been over a year ago. She is now getting IVIG infusions every month to try and help her autonomic issues.
Lani knows she is different. She wants to go to school so bad but she just cannot. Her immune system is so weak. She occasionally gets to go to our church, First Apostolic, in our hometown but other than that she only goes to her specialists.
Even after all Lani has been through, she still puts on a smile that can make anyone's day brighter. She loves with her whole heart. She enjoys coloring, playing with blocks and stickers, and watching movies on her iPad. She loves all things disney, and really enjoyed her make a wish trip to Disney World.
ROHHAD has affected every aspect of our lives. Lani has 24 hour nursing in our home. She has a doctor appointment almost every week with one of her specialists. This is her life. This is what she has dealt with for almost 4 years now. There have been so many hospital stays and time away from our home. She endures so much, more than most people could ever imagine. This is why research for ROHHAD is so important. We must find a cure. Too many precious children have died from this. And every day that passes, I thank God for another day with Lani. But that fear lingers. Every smile I see from her, I wonder if it will be the last. Every time she gets sick, I fear she won't make it through. This fear is real for lots of parents who see their child suffer from ROHHAD. we MUST find a cure.
Alayna after ROHHAD
