Tell us a little bit about your organization and what lead you to create it?
The Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE, Inc.) is a 501(c)(3) non-profit charitable organization which was created to provide family support for children afflicted with gastrointestinal conditions, birth defects, and diseases which have led to Short Bowel Syndrome (SBS) and their healthcare providers. SBSNE, Inc. has been created to promote awareness, provide parent-to-parent, financial, and educational support for families who have children who have been diagnosed with Short Bowel Syndrome, as well as providing at least 10% of all monies brought in to various researchers who are investigating the birth defects leading to and causes of Short Bowel Syndrome.
My son Kyrie was born with a rare birth defect called Gastroschisis in April 2012. Six days after birth, surgeons had to remove all but 12cm of his small intestine leaving him with a chronic illness called Short Bowel Syndrome (SBS). We first were able to bring Kyrie home at 3 ½ months old. Kyrie has spent over half his life admitted to Hasbro Children’s Hospital for various reasons, including having 16 surgeries throughout his life, 2 of them being major. He is dependent on IV nutrition, called TPN (Total Parental Nutrition) in which he receives through a central line and has a feeding tube to receive feedings through his stomach to survive. Individuals with SBS suffer from malnutrition, malabsorption, vitamin and electrolyte deficiencies, dehydration, vomiting, diarrhea, etc. SBS is a life long condition that can sometimes turn fatal very quickly and the future is always unpredictable but we are nothing but hopeful for the best possible future for Kyrie.
Throughout the past 5 years, my family and I have struggled in many ways due to SBS; emotionally, physically, financially, and mentally. Just like many other families in our situation, we were told by our health insurance company, to quit our jobs, get divorced, and go on welfare in order to receive what we need for our children. That being said, we, just like many others, also do not qualify for any assistance. In order to maintain Kyrie’s nutrition, it costs us a minimum of $700.00 a month out of pocket. For example, we give Kyrie a blended diet of all organic foods through his feeding tube in his stomach. Before we started this, Kyrie was dependent on IV nutrition 7 days a week. After feeding his gut this blend for a year and a half, we have gotten him down to being dependent only 3 days a week on IV nutrition. This is a blessing in itself because we were told he would never come off it (being on it can cause liver failure) just like many other children who live with Kyrie’s condition. That being said, of course as a parent, you have to sacrifice and will do anything you have to do to save your child’s life and that is what we are doing.
Also, leading up until he was 3 years old, we received no help with obtaining diapers. It costs us a minimum of $120 a week for diapers, creams, etc, as we were going through a minimum of 20 diapers a day and many tubes of cream due to the frequent diaper changes. Just like our family, other families spend months at a time to over a year, living in the hospital due to Short Bowel Syndrome. This is cause for needing to cut hours at your place of employment, the loss of a job, and possibly even your home.
January of 2016 is when I contacted Allan Hassenfeld the former Chairman and CEO of Hasbro Toys (HAS). I had explained my situation to Allan along with my dreams of one day having an NPO that will support children who live with SBS and their families, along with a multidisciplinary clinic at Hasbro Children’s Hospital to care for our children which would include Pediatric Surgery, GI, Nutrition, Feeding Therapy, Child Psych, Social Work, Case Management, etc; a model similar to the Tomorrow Fund. Allan was very supportive and had said if I were to obtain my 501(c)3, he would support my efforts. I then partnered with another SBS mother, Ann Alford, who lives in CT whose child she adopted and is 21 years old. Ann has her M.S. in Human Development, Non-Profit Management and Counseling, works with hospice, and does ILST training with individuals who have brain injuries. We have worked very closely together this past year and balance each other’s workings. This past December, we registered with the state of Rhode Island as an NPO and submitted our 501(c)3 application which we are currently waiting on obtaining.
2. How do you manage leading a non-profit among all of your other major responsibilities, particularly as a young parent?
I have been a caregiver my whole life. Beginning with assisting in caring for my grandmother until she had passed in 2010. In April 2011, my husband was diagnosed with Multiple Sclerosis and during August of 2011, I became pregnant. In the beginning of October 2011, at 14 weeks pregnant, we found out Kyrie would be born with a birth defect and it became a high risk pregnancy. Six days after Kyrie was born, we didn’t know if he was going to make it through his first major surgery. Kyrie has spent over half of his life admitted to Hasbro Children’s Hospital. There have been times when Kyrie and my husband would be admitted at the same time, as my husband has also became ill with his own GI issues. For the past five years of my life I have had many individuals tell me “God doesn’t give you what you can’t handle” and I respond, “well, he think’s I’m made out of concrete.” Before Kyrie, I used to be a planner. Since having him, I have learned you need to take each day as it comes and you have to tackle each obstacle with all of your being and just come on top, to the best of your ability. We have no other choice.
3. What are the teams plans for taking SBSNE to the next level? What big events are you aiming to initiate in the coming year?
As an organization, we have partnered with:
-Avery’s Angel’s Gastroschisis Foundation (who supports children born with the birth defect-Gastroschisis- which my son Kyrie was born with)
-Angel Flight East (who provides flights of medical necessity for children, free of charge)
-The Morgan Leary Vaughan Fund (who supports Necrotizing Enterocolitis research; another cause of SBS)
We also have recently started working with Prolacta Bioscience (“Prolacta Bioscience is a privately held, life sciences company dedicated to improving the quality of life in the most fragile infants through the harmony of nature and science. We create specialty formulations made from human milk for the nutritional needs of premature infants in neonatal intensive care units (NICU).”; website below) to help improve infant outcomes. Another company we are collaborating with is Einsof Biohealth (a US-based biotech company whose mission is to provide superior wellness through biotechnology) to ultimately help those individuals obtain another resource of hydration solution which uses a new technology beneficial to absorption.
Since we have not yet received our 501(c)3 at this time, we are unable to actively host fundraisers, yet with the in-kind donations we have received, we have been able to pay a phone & grocery bill for a local Hasbro Children’s Hospital patient’s family (little boy with Short Bowel Syndrome) and purchase a mini-fridge with dry erase board for a family from Idaho for storage of their TPN/IV bags. We also have received a donation of twenty backpacks from the local business, BENRUS, Inc., which we will modify for use of feeding/IV pumps and we will give these to families in need. SBSNE has also sent out roughly 30 bears to children across the country with a diagnosis of SBS so they know they are not alone; to provide a sense of comfort). Individuals have donated fleece blankets which we hand craft into bears (if the bear happens to fall apart because of child’s play, the child will always have a blanket).
Something else we are excited for and looking forward to, is to be exhibiting at the Oley Foundation Conference this July. The Oley Foundation supports individuals of any age on home TPN and enteral feeds. (website below) This is a national conference in which healthcare providers & specialists, pharmaceutical companies, nutritional support companies, NPO’s, patients, and their families come together for a wealth of knowledge from all over the world.
We also will be holding the SBSNE 5K Run/Walk at Roger Williams Park on June 24th. The proceeds raised from the 5K will go towards our nutritional supplement program, which the purpose of this program is to help ease some of the financial stressors of maintaining their child’s nutrition. We will send families stipends in the form of a gift card which will go towards the cost of food, vitamins, ORS, etc. and hopefully give them a little piece of mind.
Within this year, we have goals of support by providing care packages, education, financial grants & stipends, parent to parent support, spreading awareness, and contributing to research. Another form of support will also include support groups for individuals of any age who have been diagnosed with SBS. By the second/third year, we would love to be able to provide the work of a social worker/case worker to help families with the many challenges we face with this condition. As we grow, I am expecting SBSNE to be able to provide at least 25% more support for families each year.
A “big picture” dream of mine/goal by year 5, is to also one day be able to provide affordable housing for families with special needs, here in Rhode Island. Previously said, many of our families struggle. This is because they need to care for their child and may need to either decrease their hours at work or quit their job all together. At least 75% of Rhode Island’s pediatric SBS population’s families could use accommodations such as these. My thoughts are, a disabled adult is eligible for low-income housing but a family who has a disabled child, is not, how does this make sense? This needs to become an option for a family with a child who has special needs, who meet certain criteria.
Something I am also very proud to share is my workings to assist the Pediatric Surgery team at Hasbro Children’s Hospital in developing a program to help benefit our children at Hasbro Children’s Hospital. It means the world to have the support from Pediatric Surgery as they know (and of course feel) the need of this support for their patients and their families. The big picture is to one day have a model clinic such as the Tomorrow Fund for children with congenital diseases. Dr. Francois Luks, Chief of Pediatric Surgery, and Dr. Arlet Kurkchubasche, Pediatric Surgeon, (Kyrie’s surgeon), are both as eager as I am for this to happen so this give me hope for the future of many other children who are seen at Hasbro. Also to add, I am now on the Family Advisory Council for Hasbro and will soon be joining the Family Advisory Council for the NICU at W&I Hospital.
It is not easy for our families to find a balance. There are many critical circumstances that can change a families life very drastically, such as needing to fly once a month to Boston to obtain the medication their child needs to survive or to have to move to another part of the country to receive the best care for their child as possible. This is a situation one of our families are living with right now and may be facing homelessness; not a practical situation for a chronically ill child (a few children’s stories will be sent soon).
4. How can Rhode Islanders further support the cause? What organizations would be most ideal to collaborate with?
Rhode Islanders can further support our cause by participating in our events such as the upcoming 5K and showing support by donating various items to be sent to our families in the care packages we send out which may also include gift cards to stores such as Walmart, Target, and Stop & Shop. As well as if any local business owners would be willing to be a sponsor for our 5K, this would be a great form of support. Also by following us on social media to learn about us, what we do for our community along the way, to get updates on our events, and to show support.
5. Who do you look up to? (Inspirational individuals in your life)
Kyrie inspires me every single day. He has such a positive attitude, so full of life, friendly, and is always the first one to say “everything will be OK.” I also look up to and admire all of the other little fighters out their and their parents/care givers. I look up to my son’s surgeon, Dr. Arlet Kurkchubasche and Dr. Jeremy Aidlen who saved Kyrie’s life, various leaders in the healthcare industry. As well as local individuals such as Allan Hassenfeld, Ernie Almonte, and Giovanni Feroce.
About Nicole White:
Although you have learned a great deal about myself and my family in the aforementioned spotlight, I am 31 years old and reside in Cranston, Rhode Island. My husband and I have been together for almost 17 years, married almost six years and our son Kyrie will be five years old on April 17th. Prior to graduating high school, I attended Paul Mitchell the School and obtained my cosmetology license. While working as a hairdresser, I obtained my Associates Degree in Medical Administration. I have worked for Rhode Island Hospital for the past 9 years in administration; eight years in the Neurological Intensive Care Unit and for the past year, in Research in the Pathology Department. This past fall I joined the Family Advisory Council for Hasbro Children’s Hospital and plan on joining the Family Advisory Council for Women & Infants in the near future.
While advocating for Kyrie’s health, I have had the opportunity to meet with Rhode Island Senators Reed and Whitehouse, as well as Congressman Langevin to explain our situation and the strong need for support of our children. Also with Kyrie being the Champion Child for Hasbro Children’s Hospital, representing the state of RI, we have had the opportunity to share his story with the local news channels and newspapers. Being able to educate people about Kyrie and what makes him so special, is also giving me the opportunity to be the voice for so many other parents which I am very proud to do and receive a thank you in return.
References:
http://oley.org/?page=AnnualConference
http://www.prolacta.com/
http://www.speedlyte.com/faq/
http://averysangels.org/
Spotlight: Matt Wilson – Adventurer and Co-Founder of the Travel Company...
The Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE, Inc.) is a 501(c)(3) non-profit charitable organization which was created to provide family support for children afflicted with gastrointestinal conditions, birth defects, and diseases which have led to Short Bowel Syndrome (SBS) and their healthcare providers. SBSNE, Inc. has been created to promote awareness, provide parent-to-parent, financial, and educational support for families who have children who have been diagnosed with Short Bowel Syndrome, as well as providing at least 10% of all monies brought in to various researchers who are investigating the birth defects leading to and causes of Short Bowel Syndrome.
My son Kyrie was born with a rare birth defect called Gastroschisis in April 2012. Six days after birth, surgeons had to remove all but 12cm of his small intestine leaving him with a chronic illness called Short Bowel Syndrome (SBS). We first were able to bring Kyrie home at 3 ½ months old. Kyrie has spent over half his life admitted to Hasbro Children’s Hospital for various reasons, including having 16 surgeries throughout his life, 2 of them being major. He is dependent on IV nutrition, called TPN (Total Parental Nutrition) in which he receives through a central line and has a feeding tube to receive feedings through his stomach to survive. Individuals with SBS suffer from malnutrition, malabsorption, vitamin and electrolyte deficiencies, dehydration, vomiting, diarrhea, etc. SBS is a life long condition that can sometimes turn fatal very quickly and the future is always unpredictable but we are nothing but hopeful for the best possible future for Kyrie.
Throughout the past 5 years, my family and I have struggled in many ways due to SBS; emotionally, physically, financially, and mentally. Just like many other families in our situation, we were told by our health insurance company, to quit our jobs, get divorced, and go on welfare in order to receive what we need for our children. That being said, we, just like many others, also do not qualify for any assistance. In order to maintain Kyrie’s nutrition, it costs us a minimum of $700.00 a month out of pocket. For example, we give Kyrie a blended diet of all organic foods through his feeding tube in his stomach. Before we started this, Kyrie was dependent on IV nutrition 7 days a week. After feeding his gut this blend for a year and a half, we have gotten him down to being dependent only 3 days a week on IV nutrition. This is a blessing in itself because we were told he would never come off it (being on it can cause liver failure) just like many other children who live with Kyrie’s condition. That being said, of course as a parent, you have to sacrifice and will do anything you have to do to save your child’s life and that is what we are doing.
Also, leading up until he was 3 years old, we received no help with obtaining diapers. It costs us a minimum of $120 a week for diapers, creams, etc, as we were going through a minimum of 20 diapers a day and many tubes of cream due to the frequent diaper changes. Just like our family, other families spend months at a time to over a year, living in the hospital due to Short Bowel Syndrome. This is cause for needing to cut hours at your place of employment, the loss of a job, and possibly even your home.
January of 2016 is when I contacted Allan Hassenfeld the former Chairman and CEO of Hasbro Toys (HAS). I had explained my situation to Allan along with my dreams of one day having an NPO that will support children who live with SBS and their families, along with a multidisciplinary clinic at Hasbro Children’s Hospital to care for our children which would include Pediatric Surgery, GI, Nutrition, Feeding Therapy, Child Psych, Social Work, Case Management, etc; a model similar to the Tomorrow Fund. Allan was very supportive and had said if I were to obtain my 501(c)3, he would support my efforts. I then partnered with another SBS mother, Ann Alford, who lives in CT whose child she adopted and is 21 years old. Ann has her M.S. in Human Development, Non-Profit Management and Counseling, works with hospice, and does ILST training with individuals who have brain injuries. We have worked very closely together this past year and balance each other’s workings. This past December, we registered with the state of Rhode Island as an NPO and submitted our 501(c)3 application which we are currently waiting on obtaining.
2. How do you manage leading a non-profit among all of your other major responsibilities, particularly as a young parent?
I have been a caregiver my whole life. Beginning with assisting in caring for my grandmother until she had passed in 2010. In April 2011, my husband was diagnosed with Multiple Sclerosis and during August of 2011, I became pregnant. In the beginning of October 2011, at 14 weeks pregnant, we found out Kyrie would be born with a birth defect and it became a high risk pregnancy. Six days after Kyrie was born, we didn’t know if he was going to make it through his first major surgery. Kyrie has spent over half of his life admitted to Hasbro Children’s Hospital. There have been times when Kyrie and my husband would be admitted at the same time, as my husband has also became ill with his own GI issues. For the past five years of my life I have had many individuals tell me “God doesn’t give you what you can’t handle” and I respond, “well, he think’s I’m made out of concrete.” Before Kyrie, I used to be a planner. Since having him, I have learned you need to take each day as it comes and you have to tackle each obstacle with all of your being and just come on top, to the best of your ability. We have no other choice.
3. What are the teams plans for taking SBSNE to the next level? What big events are you aiming to initiate in the coming year?
As an organization, we have partnered with:
-Avery’s Angel’s Gastroschisis Foundation (who supports children born with the birth defect-Gastroschisis- which my son Kyrie was born with)
-Angel Flight East (who provides flights of medical necessity for children, free of charge)
-The Morgan Leary Vaughan Fund (who supports Necrotizing Enterocolitis research; another cause of SBS)
We also have recently started working with Prolacta Bioscience (“Prolacta Bioscience is a privately held, life sciences company dedicated to improving the quality of life in the most fragile infants through the harmony of nature and science. We create specialty formulations made from human milk for the nutritional needs of premature infants in neonatal intensive care units (NICU).”; website below) to help improve infant outcomes. Another company we are collaborating with is Einsof Biohealth (a US-based biotech company whose mission is to provide superior wellness through biotechnology) to ultimately help those individuals obtain another resource of hydration solution which uses a new technology beneficial to absorption.
Since we have not yet received our 501(c)3 at this time, we are unable to actively host fundraisers, yet with the in-kind donations we have received, we have been able to pay a phone & grocery bill for a local Hasbro Children’s Hospital patient’s family (little boy with Short Bowel Syndrome) and purchase a mini-fridge with dry erase board for a family from Idaho for storage of their TPN/IV bags. We also have received a donation of twenty backpacks from the local business, BENRUS, Inc., which we will modify for use of feeding/IV pumps and we will give these to families in need. SBSNE has also sent out roughly 30 bears to children across the country with a diagnosis of SBS so they know they are not alone; to provide a sense of comfort). Individuals have donated fleece blankets which we hand craft into bears (if the bear happens to fall apart because of child’s play, the child will always have a blanket).
Something else we are excited for and looking forward to, is to be exhibiting at the Oley Foundation Conference this July. The Oley Foundation supports individuals of any age on home TPN and enteral feeds. (website below) This is a national conference in which healthcare providers & specialists, pharmaceutical companies, nutritional support companies, NPO’s, patients, and their families come together for a wealth of knowledge from all over the world.
We also will be holding the SBSNE 5K Run/Walk at Roger Williams Park on June 24th. The proceeds raised from the 5K will go towards our nutritional supplement program, which the purpose of this program is to help ease some of the financial stressors of maintaining their child’s nutrition. We will send families stipends in the form of a gift card which will go towards the cost of food, vitamins, ORS, etc. and hopefully give them a little piece of mind.
Within this year, we have goals of support by providing care packages, education, financial grants & stipends, parent to parent support, spreading awareness, and contributing to research. Another form of support will also include support groups for individuals of any age who have been diagnosed with SBS. By the second/third year, we would love to be able to provide the work of a social worker/case worker to help families with the many challenges we face with this condition. As we grow, I am expecting SBSNE to be able to provide at least 25% more support for families each year.
A “big picture” dream of mine/goal by year 5, is to also one day be able to provide affordable housing for families with special needs, here in Rhode Island. Previously said, many of our families struggle. This is because they need to care for their child and may need to either decrease their hours at work or quit their job all together. At least 75% of Rhode Island’s pediatric SBS population’s families could use accommodations such as these. My thoughts are, a disabled adult is eligible for low-income housing but a family who has a disabled child, is not, how does this make sense? This needs to become an option for a family with a child who has special needs, who meet certain criteria.
Something I am also very proud to share is my workings to assist the Pediatric Surgery team at Hasbro Children’s Hospital in developing a program to help benefit our children at Hasbro Children’s Hospital. It means the world to have the support from Pediatric Surgery as they know (and of course feel) the need of this support for their patients and their families. The big picture is to one day have a model clinic such as the Tomorrow Fund for children with congenital diseases. Dr. Francois Luks, Chief of Pediatric Surgery, and Dr. Arlet Kurkchubasche, Pediatric Surgeon, (Kyrie’s surgeon), are both as eager as I am for this to happen so this give me hope for the future of many other children who are seen at Hasbro. Also to add, I am now on the Family Advisory Council for Hasbro and will soon be joining the Family Advisory Council for the NICU at W&I Hospital.
It is not easy for our families to find a balance. There are many critical circumstances that can change a families life very drastically, such as needing to fly once a month to Boston to obtain the medication their child needs to survive or to have to move to another part of the country to receive the best care for their child as possible. This is a situation one of our families are living with right now and may be facing homelessness; not a practical situation for a chronically ill child (a few children’s stories will be sent soon).
4. How can Rhode Islanders further support the cause? What organizations would be most ideal to collaborate with?
Rhode Islanders can further support our cause by participating in our events such as the upcoming 5K and showing support by donating various items to be sent to our families in the care packages we send out which may also include gift cards to stores such as Walmart, Target, and Stop & Shop. As well as if any local business owners would be willing to be a sponsor for our 5K, this would be a great form of support. Also by following us on social media to learn about us, what we do for our community along the way, to get updates on our events, and to show support.
5. Who do you look up to? (Inspirational individuals in your life)
Kyrie inspires me every single day. He has such a positive attitude, so full of life, friendly, and is always the first one to say “everything will be OK.” I also look up to and admire all of the other little fighters out their and their parents/care givers. I look up to my son’s surgeon, Dr. Arlet Kurkchubasche and Dr. Jeremy Aidlen who saved Kyrie’s life, various leaders in the healthcare industry. As well as local individuals such as Allan Hassenfeld, Ernie Almonte, and Giovanni Feroce.
About Nicole White:
Although you have learned a great deal about myself and my family in the aforementioned spotlight, I am 31 years old and reside in Cranston, Rhode Island. My husband and I have been together for almost 17 years, married almost six years and our son Kyrie will be five years old on April 17th. Prior to graduating high school, I attended Paul Mitchell the School and obtained my cosmetology license. While working as a hairdresser, I obtained my Associates Degree in Medical Administration. I have worked for Rhode Island Hospital for the past 9 years in administration; eight years in the Neurological Intensive Care Unit and for the past year, in Research in the Pathology Department. This past fall I joined the Family Advisory Council for Hasbro Children’s Hospital and plan on joining the Family Advisory Council for Women & Infants in the near future.
While advocating for Kyrie’s health, I have had the opportunity to meet with Rhode Island Senators Reed and Whitehouse, as well as Congressman Langevin to explain our situation and the strong need for support of our children. Also with Kyrie being the Champion Child for Hasbro Children’s Hospital, representing the state of RI, we have had the opportunity to share his story with the local news channels and newspapers. Being able to educate people about Kyrie and what makes him so special, is also giving me the opportunity to be the voice for so many other parents which I am very proud to do and receive a thank you in return.
References:
http://oley.org/?page=AnnualConference
http://www.prolacta.com/
http://www.speedlyte.com/faq/
http://averysangels.org/