May 21st 2008 I was blessed with a healthy baby girl named Destiny, 6lb 4ounces, but five months later October of 2008 our lives were changed forever. Destiny was diagnosed with Lissencephaly which is a malformation of the brain. Unfortunately Destiny has severe developmental delay, with at least six seizures a day, hip dislocation, G-tube fed, wheelchair bound, non-verbal and now her newest diagnosis Neuro Muscular Scoliosis.

I have decided to bring what we are going through to the worlds attention. Due to Destiny's complex medical issues she requires 24-hour care nursing which includes Private Duty Nursing (PDN) and Prescribed Pediatric Extended Care (PPEC). She is totally dependent for her care, needs assistance with meals, daily functioning living, and personal hygiene. We have been dealing with Social Security and Medicaid challenges, losing services for months. The system seems to be working against us, this week we learned that Destiny will no longer be able to receive Private Duty Nursing (PDN) and attend the Prescribed Pediatric Extended Care (PPEC) Center along with other services due to our income and 50/50 shared custody that her dad and I have in place.

I have always been employed on a full-time basis fortunately, and tried to make a better life for my kids but to know that while trying to provide a stable life for my family it could mean having to face an almost unsolvable situation. I recently accepted a new job opportunity which involves a 50-minute commute each way, making it even more challenging not having a place for my daughter to go. I have started the process for crisis consideration for the Medicaid Waiver program through the Agency for Persons with Disabilities but unfortunately this process can take 60-days to review and is not guaranteed approval. I do not know of any other avenues or resources available for my daughter and it is a helpless feeling.

On average PPEC and PDN services cost about $11,000/month not including medications and daily supplies my daughter needs. I am telling our story in hopes that a solution can be found, to get my daughter the help for her to live a comfortable life. I also need awareness to be made as to how challenging it is to have a special needs child and obtain the aid required to properly care for them especially in this 20th century. There should be resources reaching out to help our children but they are not.

I thank everyone for the support in advance.. Please share “Our Story-Destiny”