Support the most beautiful sendoff for Makayla.

My brother is a first responder, firefighter, and paramedic. His 15-year-old daughter, Makayla, and her family need your support more than ever!

Makayla went in for spinal surgery, and it didn’t go as planned. Anna left this update:

“Update on our week in recovery. Monday was surgery, lasted about 13 hours. Surgeons could only fuse the lower spine because when they put the top part of the rods in at T2, she was losing motors (there was no signal from the waist down). Luckily, our team uses neuromonitoring, so if any move they make during surgery aggravates the spinal cord in some way, they are alerted and can then back off. They tried about 10 times to put the rods in. Every time, she lost signals. They took them back out, let her get back to baseline, and tried again. Our surgeon came up with a plan B: Makayla wears a halo traction device for 4 weeks, slowly adding weight to it so that it will slowly stretch the spinal cord. After the 4 weeks, they will open her back up and retry the T2-pelvis fusion. The hope is that by that time, the spinal cord is in a nice, straight position and doesn’t fight the fusion, and no feeling/movements are lost. PT started Tuesday. With MPS1 patients, it takes a while longer to recover. Well, Tuesday evening, we got her to sit up in the bed with legs hanging (back supported, of course, since she cannot hold herself up yet). That went okay—super painful. Wednesday comes around. Morning PT—sitting up in bed again. Doing well and stable, they decide to move us to the floor out of ICU. We get upstairs and settled, then comes afternoon PT—sitting up in bed, move to standing and pivoting to a reclining chair (all assisted). Gave oral meds for pain control. After 5-10 mins in the chair, Makayla started to look ill and said she felt weird. Then she said she couldn’t feel anything. I grabbed her arm; she couldn’t feel it. I grabbed her feet; same thing. I asked her to wiggle her toes; nothing. Since our therapist wanted her in the chair for 30 mins so she could do paperwork, I had to go in the hall and call her in quickly. She called our surgeon (who was in surgery operating). He rushed up, examined her, gave orders, and sent us back to the ICU. In the next few minutes, Makayla could move her big toe slightly. Thank God, feelings were coming back. Slowly, all motors came back. Makayla then started getting sick, and my poor husband jumped in quickly, rolled her, and suctioned her mouth. Thankful for his calmness and readiness to act during a crisis. Yes, we had doctors and nurses in the room, but he was closest to her head. Sadly, we are stuck in ICU, nothing to eat or drink, bed rest, no PT, back on blood pressure meds (to increase pressure—good for blood flow to the spine). Thursday, just trying to stay ahead of the pain. Friday—the same. Friday evening, halo surgery. All went well. Today went a bit better with pain. Lots of sleeping during each day and sleepless nights due to pain and other issues we’ve had with IVs and such. We are working through some other issues, but I’ll spare you all for now as this has been a novel. I’ve been dreading posting because there’s just been so much hoping for sleep tonight, and every night in our 6ish week stay that’s to come. Prayers welcomed We’d like to thank everyone who has reached out!”

Shortly after that, Cory left this update:

“Thank you all sooo much for your love and continued support through our difficult times. This one has been one of the hardest we've been through. It is absolutely horrible to watch your child go through such horrible pain, begging you to make it stop and not being able to do much about it. And to make matters worse, her left arm and leg have been cold to the touch with decreased pulses for the last couple of days. Ultrasound just revealed she has a clot reducing blood flow circulation. Waiting to see if we are going to have to go back into surgery to have it removed. Please continue to pray for our Makayla ”

These mean very significant financial burdens on top of the mental and emotional toll this is taking on them.

Please give anything you can! Every dollar helps! Please pray, send positive vibes, and whatever you believe in to get this precious girl better.