A benefit and silent auction for Lola Jean Camp will be held this Saturday, October 20th at 4:30 PM at Mike Miller Park in the main pavilion.
Lola is the 15 month old daughter of Brady and Alecia Camp. Lola was diagnosed with a rare genetic disease called Spinal Muscular Atrophy (SMA) in January 2018, when she was 5-months-old. She was not meeting her milestones like head control, weight bearing on legs and rolling over. She was 8 weeks premature, so that took most of the blame. At the time of diagnosis, she could only move at the wrist and ankles.
SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SPINRAZA is currently the only FDA approved treatment for SMA and is given as an injection into the cerebrospinal fluid (the fluid in the spine), a procedure called intrathecal injection. This delivers medication directly to the CNS.
Lola has had 5 Spinraza injections since Jan 2018. Her next spinraza injection is Nov 16, 2018. The 5ml of Spinraza cost $175,000 per dose. The procedure with drug cost $408,000 each time. She will have these for the rest of her life or until there is a cure. Other drug companies have drugs in clinical trials but not yet FDA approved.
Aside from the Spinraza injections, Lola also failed her swallow study which led to having a g tube inserted to allow her to eat through her stomach. She is in physical therapy twice each week and occupational therapy twice each month in addition to multiple doctors visits. Each night, she sleeps with a BiPAP machine and oxygen to help her breathe. The family also has had to invest in various equipment to help clear her lungs of secretions such as a cough machine, suction machine and an airway clearance vest. Her immune system is also compromised so her parents must keep her “in a bubble” so to speak and limit her interaction with others during cold/flu seasons.
“Lola has progressed so much since Jan 2018. Each injection we see more and more movement. She can move her arms and legs a whole lot more now and can roll over. We are still working on head control and sitting up but that will come in time. We are in the process of trying to get her a stander (it will help her bear weight on her legs) and a wheelchair so she can be more independent. That is why we are have the benefit because insurance has denied us on some of her positional equipment.” explains her mother, Alecia.
There have currently been over 75 items donated for the silent auction. Hamburgers and hotdogs will be served at the event as well.
“God is going to do great things with this little girl!! We cannot thank everyone for the prayers, love and support. It’s been amazing.” her mother added.