Could you be
Iris's nurse?
We are searching for a compassionate, skilled nurse to join our home team and help Iris thrive. If you have experience with medically complex pediatric patients — or know someone who does — please read on.
A one-year-old full of light — and a care team that needs you
Iris Hope LaValle was born on April 8, 2025 — and she has already defied the odds in ways her doctors could not have predicted. She became the first child with her specific MRPL39 mutation known to survive her first birthday. She smiles. She reacts. She is here.
Iris has a rare mitochondrial disease called Leigh Syndrome, caused by a biallelic mutation in the MRPL39 gene. She lives at home in Venetia, PA with her parents Casey and Amanda, and her siblings Owen and Eliana. She depends on a home ventilator, a tracheostomy, and a central line for TPN nutrition — and she needs a skilled, loving nurse by her side.
Her parents are dedicated, highly informed advocates. Her mother Amanda is a speech-language pathologist. Her father Casey is deeply versed in Iris's genetics, hospital course, and research landscape. This is a family that will work closely with you, support you, and welcome you in.
Iris's care needs at a glance
Caring for Iris is both medically demanding and deeply rewarding. Here is what her day-to-day care involves.
Tracheostomy Care
Routine trach care, suctioning, and tube changes. Monitoring for secretions and airway obstruction. Comfort with emergency trach protocols.
Home Ventilator Management
Monitoring and managing a home mechanical ventilator. Responding to alarms, circuit changes, and ventilator troubleshooting.
Central Line & TPN
Broviac central line care, dressing changes, and TPN administration. Strict sterile technique is essential to prevent infection.
Cardiac Monitoring
Iris has hypertrophic cardiomyopathy. Continuous monitoring of cardiac status, pulse ox, and vitals is a core part of every shift.
Medication Administration
Administering a complex medication schedule including mitochondrial support supplements, cardiac medications, and PRN medications.
Family Partnership
Working closely alongside Casey, Amanda, and Iris's medical team. Clear, proactive communication and detailed shift documentation are expected.
The right nurse for Iris
Clinical skill matters — but so does warmth, patience, and a genuine love for caring for children. We are looking for both.
Required Qualifications
- Active RN or LPN license in Pennsylvania
- Experience with pediatric patients
- Tracheostomy care and suctioning competency
- Home ventilator experience or willingness to train
- Central line care and TPN administration
- Current CPR / BLS certification
- Reliable transportation to Venetia, PA
Preferred Experience
- Pediatric ICU or NICU background Preferred
- Prior private duty / home health nursing Preferred
- Experience with mitochondrial or neurological disease Preferred
- Comfortable in a home setting with family present
- Strong written documentation skills
- Emotionally resilient and consistently positive
- Team-oriented and open to family communication preferences
"We know what it takes to care for Iris — and we know that the right nurse becomes part of our family. If you are someone who shows up fully, communicates openly, and finds meaning in caring for a child who is fighting with everything she has, we want to hear from you."— Casey & Amanda LaValle, Iris's Parents
Express Your Interest
Fill out the form below and we will be in touch. All information is kept private and shared only with Iris's family.