Our Princess Presley is the light of our family, her smile brightens a room, she is our youngest out of our 5 children.
At the early age of 4 months old our world fell apart, when genetic results came back with the word “POSITIVE “ our baby was diagnosed with a extremely rare genetic progressive terminal diagnosis - Pontocerebellar Hypoplasia type 6, RARS-2 which is a deteriorating terminal Mitochondrial Disorder (genetic disorder).
Doctors say prognosis is poor and there is no cure.
In addition Presley 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 oxygen dependent, gtube dependent, she is non verbal, non mobile, and has no vision suffers from blindness.
She is in palliative care through her Hospice Team.
Presley’s care consist of round the clock care, she depends on a concentrator, oxygen tanks, ventilator machine (high flow) VEVO 45,
cough assist machine, tube feeding machine, suction machine, pulse ox machine, multiple medications, rescue seizure medications as well.
Our sweet girl never seems to never catch a break, at her 2 years of age Presley has had 33 hospital admissions all lasting 5-21 days.
Once getting her stable and finally getting discharged we leave the hospital with more questions than answers, Presley being the only case in Texas with this severe genetic condition, some doctors tell us “ there’s nothing more they can do”, we refuse to give up and we want to continue to give our daughter care.
We are currently admitted going on several weeks and unable to work, we are at bedside at the hospital with our baby.
We have lost our job, due to many admissions and attending many doctors appointments with her 9 specialists, all of her specialists are located out of town, we are trying to transition to relocate closer to Presley’s doctors for continuing care, we are asking if the community can help us out in this great time of need. We need your support to keep her comfortable and loved, any contribution goes a long way.
All prayers needed.
God Bless.