Hello Team Jaela,

Wow, I can't believe it's almost been a year since our last update. Jaela had stopped her weekly infusions almost a year ago. Since then we've seen a change in her energy levels. Her doctor has been stressing how important it is for Jaela to be physically active. He said it's not if Jaela gets into a wheelchair it's when. We can help delay Jaela getting in a wheelchair by supporting her in working out, playing, swimming, riding bikes, etc. Jaela doesn't get very much activity in during the week but when she is with us over the weekend we take her to the gym 2 days and if she is on vacation we take her to the gym daily during that time. However it isn't enough. We recently met with Jaela's metabolic team. She does a yearly 6 minute walk test, she has been at 1,000 steps for several years until the one taken a few weeks ago she only hit 300 steps. She is losing her stress. If things dont change soon not only will she be in a wheelchair sooner but the doctor is concerned that if she isn't more active her lungs will shrink and eventually it will be hard for her to breathe. 

Please continue to keep Jaela in your prayers.

- Chris & Malisa Hernandez