My daughter, Eden Brooks, is 7 ½ years old. That ½ is very important, because she continues to beat the odds, and surprise everyone with her determination and resilience. Eden loves her momma, her family, her puppy, her nurses, princesses, Disney World, the beach, and all of the other things little girls her age love.
But, unlike most little girls her age, Eden has an ultra-rare neurodegenerative disease, Late Infantile Metachromatic Leukodystrophy.
Diagnosed at 24 months of age, she was not expected to see her third birthday. Thanks to her determination and excellent care, she is still with us today. As long as her level of care remains the same, she should be with us many more years.
Getting Eden where she is today with her amazing team and the resources she has needed to do as well as she has took us from January 2011 until November 2014. During that time she had multiple hospitalizations, staying as long as 2 months at a time, and rarely being home more than 6 weeks before another stay. Since November 2014, she has only been hospitalized once, for a weekend in June, in the PICU. It was a stay that could have easily kept her in for at least a month, but due to her amazing care team, we were able to have her discharged quickly, and work on getting better at home.
I am a single mother, and a Spanish teacher. I have 17 years of experience. I have a Master’s degree. Eden’s care and services allow me to work while knowing she is safe. I am able to keep Eden on my private health insurance, which pays a significant part of her care, as well as provide for our daily needs.
Eden’s disease is progressive, and our only hope is to slow the progression by keeping her as healthy as possible. This requires a round-the-clock nursing team due to her need to be monitored day and night by someone skilled to intervene. Most nurses take one look at the work required to keep her healthy and walk right out the door, but the nurses who have stayed with us are amazing. It also requires a strict routine of suction, CPT, nebulizers, ventilator, catheters, seizure interventions, temperature monitoring, heart rate monitoring, g tube feedings and medicines, and I am sure I am forgetting something. It requires a team of doctors who knows her, doctors who work well with each other and with me to provide the best care possible.
I am extremely concerned about the change from Traditional Medicaid to managed care because I have been in this situation before. I have had to fight for everything, right down to Eden’s formula. Her doctors have had to send her to the ER or admit her because services or medicines were refused. I have had to quit my job due to lack of nursing and too much time in the hospital. Despite my education and desire to work, I have had to rely on the government to help with our daily needs. This is very likely what will happen again if her level of care changes.
I understand there is concern about the unfairness of allowing the small percentage of children on MDCP to remain on Traditional Medicaid while every other waiver moves to managed care. As a parent, I would give ANYTHING for my child to have less severe needs and not need the level of care provided by MDCP. We are just asking that the kids like my Eden, the kids for whom a change in level of care could be a life or death situation, be able to keep Traditional Medicaid. To keep their doctors, to keep their nurses, to keep their medicines and supplies. For my Eden, a delay in services could kill her. And I know there are many other kids in the same situation.
PTFK IS COMMITTED TO BEING A VOICE FOR OUR
WEAKEST AND MOST VULNERABLE LITTLE CITIZENS.
JOIN US IN STANDING UP FOR THOSE WHO HAVE NO VOICE.