Sloane's NAPA fund

Sloane is a gentle, sweet, loving little girl with a fighter's spirit. She loves people, music, and giving mommy and daddy kisses! She loves everyone, but is a total Daddy's girl! Sloane was diagnosed with Prader-Willi Syndrome at birth, but has the opportunity to make major progress develpmentally thanks to new treatments and therapies- with our help!

Prader-Willi syndrome and infantile spasms

PWS is a complex genetic disorder typically characterized by low muscle tone, cognitive disabilities, and chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity. 

Besides PWS, Sloane has been diagnosed with scoliosis and infantile spasms (a seizure disorder). She wears a brace for scoliosis, which has caused additional developmental delays.

Recently, testing confirmed that Sloane had been suffering from infantile spasms (seizures) which most likely caused additional, if not most, of her developmental delays (beyond the effects of PWS alone). Luckily, these spasms have been mostly controlled and her progress has significantly progressed since then.



Due to the combination of PWS, scoliosis treatment, and these additional seizures, at 2 years of age, Sloane cannot yet do the things that other children her age can: sit up, smile consistently, feed herself, stand, walk, or talk. 

It takes a village

Natalie and Steven have been dealing with the physical, emotional, and financial toll of this challenging syndrome for over 2 years. Sloane is the size of a healthy 2 year old, but cannot support herself to sit or walk, so has to be carried by her parents, which is extremely physically taxing. But perhaps their biggest challenge is staying on top of all of her therapies and dealing with the insurance company to make sure they cover all that they should. Sloane currently receives feeding therapy 2x/week, traditonal physical therapy 2x/week, occupational therapy 1x/week, and infant stim therapy 1x/week.  She also routinely sees her pediatrician, neurologist, endocrinologist, orthopedic dr for scoliosis, GI dr, and nutritionist. Sloane has also travelled to Florida to see a PWS specialist and her parents are in frequent contact with her as she is one of a small handful of doctors who is knowledgeable on PWS.



Sloane's Intensive Therapy

NAPA  is a state of the art  "abilitation" center that employs a team of highly trained and dedicated therapists under one roof in Los Angeles. Patients from around the world seek out this special facility.

Sloane particpates in 2 rigorous programs at NAPA: CME and the Neurosuit.

CME (Cuevas MEDEK Exercise) or the Dynamic Method of Kinetic Stimulation (MEDEK) is a physical therapy approach that improves Sloane's gross motor skills. Sloane completes training on movements that lead to sitting, standing, and walking.



The NeuroSuit is a therapeutic suit Sloane wears made of a vest, shorts, knee and elbow pads, and shoe attachments. All these pieces are interlocked by bungee type cords. These cords assist Sloane with proper alignment of her body. By using the suit, Sloane will build muscle at a faster pace and the skills she is learning  will be amplified to her central nervous system. The hope is that her results will be faster in terms of improved motor skills, performing specific exercises, and functional activities.


Short term goals for Sloane's time at NAPA are gaining core/trunk strength and head control. Long term  is walking unassisted! Because PWS individuals have low muscle tone, all of the skills we take for granted are more challenging for them. Everything from early developmental skills (rolling, crawling, sitting up) to advanced skills (swimming, riding a bike, running) will always be harder for Sloane to master. Even the fine motor skills like using scissors, peeling stickers off paper, pushing buttons on toys, etc, will be harder. Intensives at NAPA will make achieving these life skills much more attainable and at a faster rate.  After her initial round of intensive therapy, Sloane has already made significant progress in controlling her head, a key achievement which should unlock other abilities!



Funds for Sloane

Sloane's insurance does not cover this special, intensive, results-oriented program.

Ideally, Sloane will complete 4 three- week sessions per year to get her where she needs to be.  At  $4800 for each session, it will cost nearly $20,000 per year for this life-changing therapy.  Sloane's gofundme campaign aims to take some of the burden off of this amazing family and allow them to focus their energy on Sloane's continued development.

As Natalie and Steven's village, we may not be able to be there to manage the myriad of appointments for Sloane or ease the emotional burden of worrying about a child with special needs, but we can help Sloane make actual PROGRESS that will substantially improve her quality of life, and the quality of life for the entire Inouye family. As Sloane becomes more independent and able to engage with the world around her, life will get better and better for this amazing family! Contributing to this fund will enable Sloane to continue to attend NAPA and make crucial progress in the all important first developmental years. All gifts will be truly life changing for Natalie and Steven.