Podcasts about tsc mom

Adriana Piltz, is Founder & CEO of Nicky's Gardens of Hope (NGOH). She came on the podcast back in October 2018 to give us an introduction and explanation of this one of a kind project. In this episode she gives us an update, discussing what's happened since we last talked, and why she is even more excited & passionate than ever about this unique opportunity. Speaking from personal experience, having left a wall street career to start this project, Adriana knows that the gaps in the long term systems designed to support our loved ones after we are gone are only widening as individuals with IDD & Autism approach "the cliff" at age 21 and the services that once supported them start to fall away. She's committed to addressing this crisis due to lack of funding and constantly changing government requirements and NGOH is committed to providing long term care that integrates work therapy, training for employment, community engagement, recreation, and more to allowing for a quality of life for not only Nicky, but others like Nicky. Adriana wants to know, like so many of us that care for those affected by IDD & Autism, that after we die, our loved ones who are valuable individuals and deserve access to programs and opportunities that give them a chance to work, have community, and that support their needs over the course of their entire lifetime. She details why NGOH is unique, with a two corporation model combining a charity created to build safe, permanent homes for IDD & Autism affected adults & provide support services for their families with a Type B corp creating enduring business enterprises that provide funds to support the charity. Adriana and her team are well on their way to making this project a reality and have events already on the calendar in August with an IDD/Autism get together in NYC on 8/17 and an IDD/Autism parent/caregiver/family support group phone call on 8/20 to give opportunities to connect, share our stories, struggles and feel less alone. Adriana is a true visionary and has assembled a team of like-minded individuals, with financial & investment expertise, healthcare information management experience, nutrition and therapy expertise, and more to ensure the success of this revolutionary new model. Contact the team at NGOH for more information and/or to get involved! info@ngohllc.com or visit https://nickysgardensofhope.com.

Adriana Piltz, is Founder & CEO of Nicky's Gardens of Hope (NGOH). She came on the podcast back in October 2018 to give us an introduction and explanation of this one of a kind project. In this episode she gives us an update, discussing what's happened since we last talked, and why she is even more excited & passionate than ever about this unique opportunity. Speaking from personal experience, having left a wall street career to start this project, Adriana knows that the gaps in the long term systems designed to support our loved ones after we are gone are only widening as individuals with IDD & Autism approach "the cliff" at age 21 and the services that once supported them start to fall away. She's committed to addressing this crisis due to lack of funding and constantly changing government requirements and NGOH is committed to providing long term care that integrates work therapy, training for employment, community engagement, recreation, and more to allowing for a quality of life for not only Nicky, but others like Nicky. Adriana wants to know, like so many of us that care for those affected by IDD & Autism, that after we die, our loved ones who are valuable individuals and deserve access to programs and opportunities that give them a chance to work, have community, and that support their needs over the course of their entire lifetime. She details why NGOH is unique, with a two corporation model combining a charity created to build safe, permanent homes for IDD & Autism affected adults & provide support services for their families with a Type B corp creating enduring business enterprises that provide funds to support the charity. Adriana and her team are well on their way to making this project a reality and have events already on the calendar in August with an IDD/Autism get together in NYC on 8/17 and an IDD/Autism parent/caregiver/family support group phone call on 8/20 to give opportunities to connect, share our stories, struggles and feel less alone. Adriana is a true visionary and has assembled a team of like-minded individuals, with financial & investment expertise, healthcare information management experience, nutrition and therapy expertise, and more to ensure the success of this revolutionary new model. Contact the team at NGOH for more information and/or to get involved! info@ngohllc.com or visit https://nickysgardensofhope.com.

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

In this final segment, Julie goes into detail discussing her son's progress once he became eligible through a waiver funded by the Louisiana Department of Health’s Office for Citizens with Developmental Disabilities. Julie was able to hire a Direct Support Professional of her own choosing to work one on one in the home, community, and more. Over time, her son was able to lessen the grip of a narrow focused interest/obsession with trains for which Julie and her family had gone to extremes in order to address. She gives a thorough look at the process of becoming eligible for this type of service, finding a good match and how through collaboration between herself, her son and this worker, hope for a better future has been reignited.

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change. (www.bensound.com)

In Part 2 of this 3 part episode, Julie Comeaux gives us more details on the events that happened with her son leading up to filing a systemic complaint as well as having one filed against her. This ultimately led to filing a systemic complaint against the state department of education. She ended up taking her son out of the school system to homeschool. Julie describes the tools she used, including Ross Greene's methods, the decision to start psychiatric medication, and more. Julie exemplifies an example of how educating one's self on special education law, perseverance, patience and grace under pressure, plus faith in her son's competence can affect change.(www.bensound.com)

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

In Part 1 of this series, Julie Comeaux begins to give an inside look at her experiences in the education system in Louisiana with her son that has TSC. She has attended multiple parent training events on IEP, 504, Transition, and SPED Law 101 and believes that parents can be educated to be the best voice possible for their children, sometimes, the only voice! Stay tuned for more detail on this rocky ride with misunderstanding, fear, and ignorance, in this case in the local school district, that we often encounter related to various behavioral manifestations of TSC, what can go wrong and how persistence and inner fortitude are necessary to affect change. (intro/outro music www.bensound.com)

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

My guest, Chelsea Holman, is a TSC Mom from Nevada. Impacted personally by TSC, having a son, and various other family members affected with the diagnosis, Chelsea gives a raw look at receiving a diagnosis later in life, managing and reigning in chaos with medications, diet issues, depression, judgments from outsiders, amazing resolution of kidney issues, using CBD oil, angiofibromas, doctor run around, and more. This is part 1 of a 2 part episode. Throughout, Chelsea shares from her heart and soul with honesty, compassion, much inner fortitude, and love. (intro music: https://www.bensound.com

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

Lauren Shores Shillinger was a dynamic, enthusiastic guest, ready to share her lived experience as a TSC Mom, Advocate and Chair of TS Alliance of Maryland. She was recently named one of four recipients of the TS Alliance Volunteer of the Year Award for 2018! After a 12-year career in the electronic healthcare industry when her daughter Brynleigh was born she became a stay at home mom. Brynleigh was diagnosed at 9 1/2 months with TSC and even with her electronic healthcare background had never heard the diagnosis of Tuberous Sclerosis Complex. Since then, not only has Lauren jumped in with both feet to managing and advocating for her daughter' but also volunteering, advocating, marching for federal funding on Capitol Hill, participating in the National Step Forward to Cure TSC walk, fundraising, etc. We discuss a lot here....from her lived experience with seizures, brain surgery, getting an autism diagnosis, and many more frustrations & miracles along the way. She shares about a new project she's working on related to compiling a vast resource list for the TSC community to meet a huge unmet need for resources, as well as ongoing projects like obtaining proclamations at local and statewide levels recognizing May 15 as TSC Global Awareness Day. Lauren's words in a recent bio describing her and her family's efforts certainly ring true, "We have completely dedicated ourselves to making a difference in not only Brynleigh’s life and all who are affected by TSC". Thanks Lauren!!

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition Academy is a career and work center for students with cognitive disabilities, ages 18-22, helping them make a smooth transition into the community upon their exit from the school system. We also delve into her entry into competitive running as a coping mechanism to deal with the stressors of TSC care. A longtime runner, Reiko decided to try a short triathlon. She was hooked, and in no time, was finishing her 5th Ironman in Chattanooga, TN, winning her age group on her birthday!!, Later this year, she will compete in her 6th Ironman in Hawaii. We discuss training, racing, fundraising, and much more. Reiko draws motivation from the unpredictable and often intense nature of TSC care, "While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free". Originally from Setagaya Tokyo, residing in Roswell, GA with her husband and daughter. "Reiko's perseverance, determination, risk-taking, traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact" (https://cdmrp.army.mil/cwg/stories/2013/donato_profile) (music credit: https://www.purple-planet.com/)

Reiko Donato, TSC Mom, Brand Ambassador at Coeur Sports, Chair of the TS Alliance of Atlanta and past TS Alliance Board of Directors Member, walks me thru the timeline from diagnosis of her daughter thru the current day. She details the process of transition (transition planning is a formal process for helping kids with IEPs figure out what they want to do after high school and how to get there)and elaborates on a new program in her home state of Georgia called Transition Academy. Transition Academy is a career and work center for students with cognitive disabilities, ages 18-22, helping them make a smooth transition into the community upon their exit from the school system. We also delve into her entry into competitive running as a coping mechanism to deal with the stressors of TSC care. A longtime runner, Reiko decided to try a short triathlon. She was hooked, and in no time, was finishing her 5th Ironman in Chattanooga, TN, winning her age group on her birthday!!, Later this year, she will compete in her 6th Ironman in Hawaii. We discuss training, racing, fundraising, and much more. Reiko draws motivation from the unpredictable and often intense nature of TSC care, "While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free". Originally from Setagaya Tokyo, residing in Roswell, GA with her husband and daughter. "Reiko's perseverance, determination, risk-taking, traits have been central to Reiko's role as an advocate, heightening awareness of TSC and promoting research to lessen its impact" (https://cdmrp.army.mil/cwg/stories/2013/donato_profile) (music credit: https://www.purple-planet.com/)

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders), affects 90% of those with a diagnosis of TSC. She also answers some questions that have come up in Facebook groups related to TAND and gives a perspective of what has worked for their family, how it has worked, as well as what has not worked, Behaviors related to TSC are a double whammy on top of the medical aspects of TSC care and management. Marlo, a bit of a veteran of the TSC/TAND lived experience, acknowledges the ongoing uncertainty and challenges TSC/TAND has presented, yet also provides insight and information, and once again, hope that quality of life is possible.

Marlo Grolnic, TSC Mom, past chair of the Tuberous Sclerosis Alliance of New England and previous guest on TSC TALKS in September 2018, takes time out of her day to give us an update on how her son's adjusted to an out of district placement he had just started when we spoke in the fall. She elaborates on how this adjustment has been for the family, as well as describing improvements in TAND related behavior since we last spoke. TAND (tuberous sclerosis associated neuropsychiatric disorders), affects 90% of those with a diagnosis of TSC. She also answers some questions that have come up in Facebook groups related to TAND and gives a perspective of what has worked for their family, how it has worked, as well as what has not worked, Behaviors related to TSC are a double whammy on top of the medical aspects of TSC care and management. Marlo, a bit of a veteran of the TSC/TAND lived experience, acknowledges the ongoing uncertainty and challenges TSC/TAND has presented, yet also provides insight and information, and once again, hope that quality of life is possible.

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This episode has something for all those in the TSC & Special Needs Communities as she touches on most of the experiences one will encounter at some point as they navigate this often uncharted path of TSC management as affected individuals and/or parent/caregivers of loved ones affected. Well worth your time!

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This episode has something for all those in the TSC & Special Needs Communities as she touches on most of the experiences one will encounter at some point as they navigate this often uncharted path of TSC management as affected individuals and/or parent/caregivers of loved ones affected. Well worth your time!

In this fascinating and inspiring episode, Caroline Ramirez, TSC Mom & Licensed Professional Counselor discusses the impact of different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. She discusses how we as parents can work with our children, to mitigate traumatic experiences which are often a part of TSC management and care and shares examples from her personal experience and successes with her daughter who had brain surgery at 15 months of age and had postoperative partial paralysis. She concludes by offering multiple practical suggestions & techniques for applying these practices in our own situations. As a body-oriented psychotherapist, she looks at how visceral reactions relate to mental health, as well as emotions and thoughts. Both of her primary ways of working were influenced by the research of Stephen Porges, who wrote the Polyvagal Theory.

In this fascinating and inspiring episode, Caroline Ramirez, TSC Mom & Licensed Professional Counselor discusses the impact of different types of trauma, shock trauma & developmental trauma, and how this is relevant to TSC. She discusses how we as parents can work with our children, to mitigate traumatic experiences which are often a part of TSC management and care and shares examples from her personal experience and successes with her daughter who had brain surgery at 15 months of age and had postoperative partial paralysis. She concludes by offering multiple practical suggestions & techniques for applying these practices in our own situations. As a body-oriented psychotherapist, she looks at how visceral reactions relate to mental health, as well as emotions and thoughts. Both of her primary ways of working were influenced by the research of Stephen Porges, who wrote the Polyvagal Theory.

Writer, Advocate, TSC Mom, Rebecca Gaunt shares her experience of TSC with her son Connor. She highlights her involvement with Cannabis legislation in GA, after finding it the only treatment adequate to gain control of devastating drop seizures. She shares the frustrations obtaining Cannabis for medical use in GA, as well as the incredible seizure control gained. She also compares effectiveness of Cannabis with and without CBD based FDA approved medication Epidiolex. Additionally, Becky poignantly shares challenges managing mental health issues in relation to TSC,, family impact and support, educational issues and much more.

Writer, Advocate, TSC Mom, Rebecca Gaunt shares her experience of TSC with her son Connor. She highlights her involvement with Cannabis legislation in GA, after finding it the only treatment adequate to gain control of devastating drop seizures. She shares the frustrations obtaining Cannabis for medical use in GA, as well as the incredible seizure control gained. She also compares effectiveness of Cannabis with and without CBD based FDA approved medication Epidiolex. Additionally, Becky poignantly shares challenges managing mental health issues in relation to TSC,, family impact and support, educational issues and much more.

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey

In this episode Rebecca shares her challenging experiences and incredible advocacy as a TSC Mom, getting an accurate diagnosis of certain TSC manifestations such as seizures, including infantile spasms and autism spectrum disorder. She gives multiple examples of how frustrating managing TSC can be when there are multiple disconnects among doctors and other professionals, even at the same institution, to whom we must turn for help. Rebecca's perseverance in the face of incredulous situations is phenomenal. She also dips into the family impact, coping and her writing. The depth and quality of REbecca's poignant and eloquent writing helps us see the reality of living with both joy and sorrow, on a daily basis, inherent in the TSC journey

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

A discussion with Shannon Grandia, wife, mother, first-grade teacher, TS Alliance Volunteer, and Advocate! She shares her experience over the last 19 years with her children, Rylee, Jake and Luke, all affected by TSC as well as spouse Rob who is also affected. Shannon is an incredible human being and the love she has for her family truly permeates this discussion. We chat about diagnoses, manifestations, treatments, family impact and more. Shannon is able to truly understand the importance of acceptance and living in the present. Her choice to focus daily on the positive and cultivate joy in her family is truly inspirational and motivating. While acknowledging the extreme challenges and uncertainty involved in managing this disease she continually expresses gratitude for all the many ways the family has been fortunate, outlining how teamwork, organization, church and community support, TS Alliance involvement, have all contributed to this beautiful life that Shannon and her family live one day at a time.

TSC Mom, Mary Comeau shares her nail-biter of an experience with TSC. From potential TSC diagnosis at 20 wks pregnancy, the start of seizures, difficulty with seizure control, keto diet, brain surgery, Early Intervention, Special Ed Teachers, and some success with CBD Oil treatment with TS Clinic at MGH, Boston, MA

TSC Mom, Mary Comeau shares her nail-biter of an experience with TSC. From potential TSC diagnosis at 20 wks pregnancy, the start of seizures, difficulty with seizure control, keto diet, brain surgery, Early Intervention, Special Ed Teachers, and some success with CBD Oil treatment with TS Clinic at MGH, Boston, MA

Renée and I go in depth into her journey with her son Aaden who is non-verbal with TSC, diagnosis to current day. Renée gives perspective from Canada on managing TSC, from diagnosis, brain surgery to current day.

Renée and I go in depth into her journey with her son Aaden who is non-verbal with TSC, diagnosis to current day. Renée gives perspective from Canada on managing TSC, from diagnosis, brain surgery to current day.

Marlo discusses the weight of a TSC diagnosis and all it's implications. From diagnosis during pregnancy to behaviors and school related issues, seizure frustrations, med management, healthcare professionals and more. She narrates the difficulty of living with the uncertainty that can be a part of TSC management and how the family works together to cope.

Marlo discusses the weight of a TSC diagnosis and all it's implications. From diagnosis during pregnancy to behaviors and school related issues, seizure frustrations, med management, healthcare professionals and more. She narrates the difficulty of living with the uncertainty that can be a part of TSC management and how the family works together to cope.