Our Sweet girl Presley is the light of our family, her smile brightens a room, she is the baby of our family.

At 2 months old Presley was rushed to the ER with involuntary movements, later diagnosed as epilepsy.

After many testings, we got the news no parent wants to hear ( a terminal genetic diagnosis with no known cure) the devastating news of knowing our baby had a positive result for a extremely rare genetic diagnosis - Pontocerebellar Hypoplasia type 6, RARS-2 which is a deteriorating terminal genetic disorder.

We were given a poor diagnosis in most cases life expectancy not exceeding infancy.

By the age of 6 months old we were given a second additional diagnosis of Mitochondrial disease.

Presley has now past infancy and is a toddler we are so proud of our little fighter, as she battles these diagnosis.

Presley has many underlying symptoms she suffers from intractable seizures, epilepsy, infantile spasms, acute hypoxic respiratory failure, chronic lung disease, severe neurocognitive/ neuromuscular impairment, muscular hypertonicity, developmental delay, severe hypotonia, dysphasia, cortical vision impairment/ blindness.

After several aspiration pneumonias Presley’s lungs are very weak, she is a DNI ( Do not intubate).

Presley is 100% dependent, she is on continuous oxygen, gtube dependent, she is non verbal, non mobile, and is vision impaired.

At Presley’s young age she has endured 35 hospital admissions, whole sequencing genetic testing, 3 MRI, 9 EEG, CAT SCANS, X-rays, multiple rescue meds, opioids, rescue meds used as maintenance, multiple seizure medications, 1 surgery g-tube (she is a DNI her disease has progressed and she is no longer able to go through any other surgery due to intubation/extubation)

With the continuous admissions we have lost our employment making it difficult to meet ends,

We are in need of your support in this great time of need to continue to provide care and be able to be by her side, any contribution goes a long way.

We thank you from the bottom of our hearts,

Prayers for Presley

God Bless.