Sloane's Fund
Donation protected
Update: May 2019 - Hello loved ones! I'm so sorry you haven't heard from us in a while. The last six months have been more difficult than normal. Sloane has been sick quite a lot, and when she wasn't, we had to continue weaning her off of one of her seizure meds (Felbatol) that can cause long term damage to the liver. So if she wasn't getting more seizures because of being sick, she was getting them because of the Felbatol wean, or from losing her first two baby teeth and the new ones (and molars) coming in! Big girl! She took it like a champ, though. Her big brother was a tad more dramatic about losing his teeth. We will not be defeated, though! Sloane is a WARRIOR and is almost over this most recent nasty cold. We are looking forward to her upcoming NAPA intensives in July and December, which you all have made possible!! In spite of the rough last few months, Sloane is thriving and happy, and still so sweet and mellow. She continues to work hard, and is vocalizing, and smiling a whole lot! She really enjoys school and has been doing great this year in Transitional Kindergarten and will be starting big girl Kindergarten in the fall. As you can see from the below videos, Sloane has come a VERY long way. She is now 5 1/2. Just two and three years ago, she had minimal strength and could barely lift or control her head or coordinate her movements. Since then, she has made huge improvements with her head, trunk control, and leg strength, and is working on even more challenging exercises at NAPA. She is climbing up and down stairs, balancing on balls, walking over beams forwards and backwards, bearing weight much better on her arms for assisted crawling, and even tolerating and participating in walking in her gait trainer (walker) with minimal complaining!! That's a really big one!! Overall her complaining has decreased drastically, which means she's much stronger and has also probably caught on to the fact that there's no getting out of her NAPA therapy. Haha! She is also more alert and awake, and engaging with people on a whole new level, and bringing her arms and hands out a lot more to play with toys and grab her bottle or spoon.
Unfortunately, as previously mentioned, Sloane is still getting a handful of daily seizures, which are her biggest road block. We are constantly working on managing and decreasing them. Next month, she will be getting a Vagus Nerve Simulator (VNS) implanted, so we are cautiously optimistic that that will bring her some relief. The VNS is basically like a pace maker but for the brain. Keep her in your thoughts and let's pray that this will help her!!
As 2020 approaches, we would love to be able to raise enough money to sign Sloane up for three NAPA intensives for next year. For those of you who don't know, the NAPA intensives are three weeks long (15 days), 2 hours a day (one hour PT and one hour CME). There are more details below about NAPA and the intensives, but in a few short words, the NAPA intensives are where this girl makes some serious headway in her progress. Please watch the videos to see her in all her glory, blood, sweat and tears! And thank you, thank you, thank you for everything that you do for Sloane and our family. We love you!! There are ABSOLUTELY no words to express our deep gratitude for your unending support and love for Sloane and our family. As ALWAYS, thank you to everyone who has donated and continues to support Sloane and our family in all different ways!! We wouldn't be where we are today without you. Go Team Sloaney!!!!
Here is her very first NAPA intensive three years ago (May 2016) and the video below is this May 2019!
May 2019
And here are a few more comparison videos....
First video September 2016 - Second video May 2018 - Third video May 2019
May 2018
May 2019
First video May 2016 - Second video December 2017 - Third video May 2019
December 2017
May 2019
First video February 2017 - Second video May 2019
May 2019
And just some videos of my girl as a proud momma! And to show you how far Sloane's come thanks to all of YOU!!
For those who don't know Sloane's background, I have copied and pasted the information from the previous campaign here.
-----------------------------
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 developmentally thanks to new treatments and therapies- with our help!
Prader-Willi Syndrome and Epilepsy
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 Lennox-Gastaut (a seizure disorder). She wears a brace for scoliosis, which has caused additional developmental delays. Around the age of 2, testing confirmed that Sloane had been suffering from seizures, which most likely caused additional developmental delays beyond the effects of PWS alone. Luckily, the seizures 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 5 1/2 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 5 1/2 years. Sloane is the size of a healthy 5 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, Dr visits, and dealing with the insurance company to make sure they cover all that they should with her medical expenses. Sloane currently receives traditional occupational and feeding therapy 1x/every other week and traditional physical therapy 1x/week. She also routinely sees her pediatrician, neurologist, endocrinologist, orthopedic Dr, GI, nutritionist and ophthalmologist.
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 participates in 2 programs at NAPA: CME and Occupational Therapy. 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. Occupational therapy (OT) assists individuals in achieving greater independence in all areas of life. “Occupations” include any meaningful activity of an individual’s everyday life. For example, a few childhood occupations include learning in school, being a family member, and playing with friends. An OT’s role is to assist individuals in performing “occupations” with the greatest level of independence possible.
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 3 three- week sessions per year to get her where she needs to be. At $4800 for each session, it will cost nearly $15,000 per year for this life-changing therapy. Sloane's fundraising 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.
Unfortunately, as previously mentioned, Sloane is still getting a handful of daily seizures, which are her biggest road block. We are constantly working on managing and decreasing them. Next month, she will be getting a Vagus Nerve Simulator (VNS) implanted, so we are cautiously optimistic that that will bring her some relief. The VNS is basically like a pace maker but for the brain. Keep her in your thoughts and let's pray that this will help her!!
As 2020 approaches, we would love to be able to raise enough money to sign Sloane up for three NAPA intensives for next year. For those of you who don't know, the NAPA intensives are three weeks long (15 days), 2 hours a day (one hour PT and one hour CME). There are more details below about NAPA and the intensives, but in a few short words, the NAPA intensives are where this girl makes some serious headway in her progress. Please watch the videos to see her in all her glory, blood, sweat and tears! And thank you, thank you, thank you for everything that you do for Sloane and our family. We love you!! There are ABSOLUTELY no words to express our deep gratitude for your unending support and love for Sloane and our family. As ALWAYS, thank you to everyone who has donated and continues to support Sloane and our family in all different ways!! We wouldn't be where we are today without you. Go Team Sloaney!!!!
Here is her very first NAPA intensive three years ago (May 2016) and the video below is this May 2019!
May 2019
And here are a few more comparison videos....
First video September 2016 - Second video May 2018 - Third video May 2019
May 2018
May 2019
First video May 2016 - Second video December 2017 - Third video May 2019
December 2017
May 2019
First video February 2017 - Second video May 2019
May 2019
And just some videos of my girl as a proud momma! And to show you how far Sloane's come thanks to all of YOU!!
For those who don't know Sloane's background, I have copied and pasted the information from the previous campaign here.
-----------------------------
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 developmentally thanks to new treatments and therapies- with our help!
Prader-Willi Syndrome and Epilepsy
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 Lennox-Gastaut (a seizure disorder). She wears a brace for scoliosis, which has caused additional developmental delays. Around the age of 2, testing confirmed that Sloane had been suffering from seizures, which most likely caused additional developmental delays beyond the effects of PWS alone. Luckily, the seizures 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 5 1/2 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 5 1/2 years. Sloane is the size of a healthy 5 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, Dr visits, and dealing with the insurance company to make sure they cover all that they should with her medical expenses. Sloane currently receives traditional occupational and feeding therapy 1x/every other week and traditional physical therapy 1x/week. She also routinely sees her pediatrician, neurologist, endocrinologist, orthopedic Dr, GI, nutritionist and ophthalmologist.
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 participates in 2 programs at NAPA: CME and Occupational Therapy. 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. Occupational therapy (OT) assists individuals in achieving greater independence in all areas of life. “Occupations” include any meaningful activity of an individual’s everyday life. For example, a few childhood occupations include learning in school, being a family member, and playing with friends. An OT’s role is to assist individuals in performing “occupations” with the greatest level of independence possible.
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 3 three- week sessions per year to get her where she needs to be. At $4800 for each session, it will cost nearly $15,000 per year for this life-changing therapy. Sloane's fundraising 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.
Organizer
Natalie Inouye
Organizer
Long Beach, CA