My heart breaks as I write this, but as a family we have reached a point where It's now clear its time to graciously seek some Help/Assistance. My precious son, Karter Chapman, born 9.24.24 is battling a rare genetic disorder called UPD Prader-Willi Syndrome (PWS). We were blessed to be able to get him home from Stanford Children's Hospital right before Halloween, but the journey is just beginning. This condition brings a host of challenges, most notably:

Insatiable Hunger: PWS makes him feel constantly hungry, leadizng to overeating and potential extreme obesity complications.

Developmental Delays: He faces delays in speech, motor skills, and learning.

Behavioral Issues: PWS can cause temper tantrums, stubbornness, and obsessive-compulsive behaviors.

Currently the Challenges we are having as a Newborn with PWS include:

Very Low birth weight: Many PWS babies are smaller than average at birth.

Weak suck: Difficulty with sucking and swallowing, leading to poor feeding.

Failure to thrive: Slow weight gain and growth in the early months.

Hypotonia (low muscle tone): "Floppy" or weak muscles, making it hard to latch onto a breast or bottle.

Need for feeding assistance: Karter requires tube feeding & then will need specialized bottles to ensure adequate nutrition.

Falling asleep during feeding: Easily tiring during meals due to weak muscles.

Lack of interest in feeding: May not show typical hunger cues.

Temperature regulation issues: May have difficulty maintaining a stable body temperature.

Scoliosis (curvature of the spine): May develop later in childhood, but early signs are present

Hormonal deficiencies: May have low levels of growth hormone or thyroid hormone.

Increased risk of infections: May be more susceptible to illnesses due to a weaker immune system.

Karter is a Fighter he was on C-PAP respiratory assistance for weeks and was able to completely get removed before he came home within 3 days as he gained enough strength to breath on his own! Proud of you Son!

The Toll It Takes:

Karter requires specialized care, including:

Therapies: He needs regular speech therapy, occupational therapy, and physical therapy to help him progress.

Medical Monitoring: Constant monitoring for weight gain, hormone deficiencies, and other health complications is essential.

Dietary Restrictions: Strict dietary controls are necessary to manage his hunger and prevent life-threatening obesity.

Why We Need Your Help:

These specialized services are incredibly expensive. On top of that, I've had to significantly reduce my work hours to provide the constant care and supervision Karter needs and Lindsay has extended her time off as she recovers from her C-Section. The financial strain is overwhelming, and we're struggling to keep up with the mounting costs associated with this condition and preparations.

Your generosity will help us:

Cover therapy costs: Ensure Karter continues to receive the vital therapies he needs to thrive.

Manage medical expenses: Pay for doctor's visits, medications, and specialized equipment.

Provide for daily needs: Help us keep a roof over our heads and food on the table while I dedicate my time to Karter’s care.

Home Modifications:

Security Systems and Monitoring: In most cases, families may need to install alarms or surveillance systems to monitor their child's access to food, especially during the night or when unsupervised.

Specialized Clothing and Adaptive Equipment: Children with PWS may have difficulties with fine motor skills, requiring adaptive utensils, clothing with modified fasteners, and other aids for daily living.

Educational Support and Tutoring: Children with PWS may benefit from specialized educational programs, tutoring, or extra support to address learning delays and help them reach their full potential.

Transportation: Frequent trips to specialists, therapists, and medical appointments can lead to significant transportation costs, especially if specialized vehicles or accessible transportation are required.

Mental Health Support: The stress and emotional toll of caring for a child with PWS can be immense. Therapy and mental health support for parents and siblings (Kenzie) may be necessary.

Every little bit counts. Even a small donation can make a big difference in Karter’s life. Please consider donating and sharing our story. Thank you from the bottom of our hearts.

I wrote this poem below shortly after his diagnosis during sleepless nights living in the Ronald McDonald House Stanford.

"Karter's Journey"

A tiny bundle, my Karter, so frail,

A month old, facing life's cruelest gale.

"Prader-Willi," the doctor gravely said,

My partner, Lindsay, filled with dread.

A genetic disorder, rare and unknown,

A hunger so fierce, it chills to the bone.

A constant craving, never satisfied,

A battle with appetite, deep inside.

Delays, behaviors, a future unclear,

The weight of his diagnosis, heavy with fear.

Specialists, therapists, a whirlwind of care,

Tube feeding, sleepless nights, a worried despair.

Lindsay, my rock, steadfast and strong,

While I Feel lost, where do I belong?

Whispers and stares, judgment unkind,

Protecting my son from the world's closed mind.

But then, a smile, a gummy bright ray,

His tiny hand grasping, making my day.

Transferred to Stanford, a beacon of hope,

Respiratory support, helping him cope.

Nurses and doctors, angels in sight,

Guiding us through the darkest of night.

Ronald McDonald House, our temporary embrace,

Family and friends, love in this place.

Gratitude swells for the kindness we've found,

Support and compassion all around.

This journey, my purpose, though tears may fall,

I'll fight for my Karter, I won't let him Fall.

Love unconditional, my guiding light,

Facing this challenge, with all my might.