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Купить Айс Чайковский

Россия , Белгородская обл. Россия Белгород, Белгородская обл. Россия Михайловка, Волгоградская обл. Россия Москва, г. Москва Россия Москва, г. Москва Россия Санкт-Петербург, г. Санкт-Петербург Россия Санкт-Петербург, г. Россия Киров, Кировская обл. Россия Кострома, Костромская обл. Россия Нижний Новгород, Нижегородская обл. Россия Оренбург, Оренбургская обл. Россия , Оренбургская обл. Россия Орёл, Орловская обл. Россия Пенза, Пензенская обл. Башкортостан Башкортостан Россия Татарстан, Респ. Россия Ростов-на-Дону, Ростовская обл. Россия Самара, Самарская обл. Россия Тольятти, Самарская обл. Россия , Саратовская обл. Россия Екатеринбург, Свердловская обл. Россия Вязьма, Смоленская обл. Россия Тула, Тульская обл. Россия Магнитогорск, Челябинская обл. I love my papa, he besides me here, he always accompney with me to fight with the monster of TSC every day. He loves swimming and bbqing with his family. He has been seizure free for 2 years. At 22 months he started having seizures. His TSC has affected his brain kidney skin and face. He was diagnosed with TSC at the age of 6 months and has been seizure free for 5 years. She has tumors in her brain, she has skin lesions,angios on her face, she has thousands of cyst in her kidneys. We are currently dealing with the emotional side of tsc. My parents took me to the hospital, where I was diagnosed with a rare genetic disease called tuberous sclerosis complex. I have tumors in my brain, left eye and skin. I have cysts all over my kidneys, high blood pressure, ADHD and hearing loss. I have been seizure free for two years now! I will eventually need a kidney transplant. I love singing and dancing, and entertaining my family. My name is Chloe. She loves to swing and be busy. She along with so many people with TS battle seizures daily, speech delays, and autism. Hannah has had some pretty amazing therapists and teachers who have helped along her on this path. She is amazing! Her smile brightens are world!! When Alex was born there was no genetic test for TSC. When he was 16 months old he had a radical right hemispherectomy for uncontrollable seizures. He was seizure free for 15 years. We were seen again by a specialist who gave him the test. At 17 Alex was diagnosed with TSC. Alex loves Wheel of Fortune, jokes, working, and family. Mason Meitzler, 18 months old with TSC. These are 2 of my 3 children, that live with TSC and the struggles that come along with it. I am amazed and proud of their resilience, as this disease has caused them many obstacles to overcome. They both suffer from epilepsy, brain, eye, and skin involvement. She has skin, eye, brain, and kidney involvement. She has never had total seizure control. Allison also has congenital lymphedema of her right arm. Allison struggles daily with the manifestations of TSC, but she fights a strong battle with the support of her family and friends. Allison is very friendly and works part time at a local grocery store. She loves to walk, read, play video games, and color. Lived and battled with tsc for 32 yrs.. He can not write but enjoys painting very much. He can not communicate with others but is always smiling. I just hope he is happy every day without pain. I was born in a sweet and happy family. My parents treat me well. My elder brother also brought me a dog to accompany me. The dog named Moby which is on the photo always stays home with me. I appreciated what they have done for me. I feel so lucky to be their family. He is 15, and about to graduate from 8th grade. Adin is a well loved kid. Loves weather, and anything to do with Nature. He is looking forward to high school and being in the same special Ed class as his big brother Mason! Although my mother has been suffering from my rare disease for many years, she is still face this and treat me well. I feel so sorry to make her angry from time to time. Nobody likes to get this kind disease, such being the case, we are supposed to accept it. Speech delay and intelectual delay. Sebastian is loving,funny,love music. Rossy is a sweet italian child! We love her with all our heart!!! He is affected by his brain face kidney and skin. He still has seizures. He turned 5 in January and loves Curious George! He is a very happy little boy who always wakes up giggling! Nothing can or will keep her down. He will turn 3 years old this summer! He is a very cheeky little boy with a lot of energy! He is a TSC figher with epilepsy! She developed normally with seizure control. Sissy was always the happiest girl I knew! She had brain surgery at 18 when the seizures got so bad. Cognitively she peaked at 1st grade level. Emotionally, at 27 she is just Her kidneys began to fail at She got a new kidney in She is a survivor, my HERO. I was missed diagnosed more then 10 years and i even had surgery on my kidney to remove angiomiolipoma. The doctors followed me for a few years untill another big angiolipoma came out ,only 2 years ago some of the doctors told about a rare disease that called Tuberous Sclerosis Complex. Since that day i am TSC brave warrior!!! I will not give up , help us to spread the world about TSC! I have tubers on my brain along with other problems from TSC. I am 12 yrs old now. I love drawing and singing. I love my family. They are an inspiration to how TSC is so different, from no symptoms except facial angiofibromas and tubers Leo to full out seizures, meltdowns, etc Tiago. But we live daily to the fullest! Love you! May 2nd marks one year seizure free after a lobectomy! Happy boy! She started school for the first time at age 10, 3rd grade in the US. We just learned she has TSC. TSC caused intellectual disabilities. She is happy, sweet, innocent, loyal, honest. Loves music and family time. Kids in class argue every day over who gets to be her best friend. Over-medicated for 6 years due to seizures. Smiles thru Dr. He is globally delayed and autistic. His Infantile Spasms were misdiagnosed for 3 years and went through 8 different medications before they were controlled with his first dose of Sabril Vigabatrin. He is currently 12 years seizure free, 10 years no meds, and minimal behavior issues. Oh yes, and he loves his family! Life is good, but his life would be better if we had a cure! She was diagnosed at 9weeks. She has multiple brain tumors and heart tumors. She has had seizures, controlled at times with medication. She is a beautiful, sweet girl and tough as nails. She is loved dearly by her 4 brothers and is already teaching all of us more about true love than we had ever known before. We are blessed by her life and so glad that she chose us. She may be TSC, but she is also so much more!! She has fought this disease bravely and will continue to battle. She is the joy in our lives and we are grateful every day for her smile and love. For my lovely fellows, people might find us a bit weird sometimes and we might feel conscious and uncomfortable about it. Believe me, from now on, they will. So stay positive, smile to those who. I love tosing and dance. He was diagnosed at age 2. He is mildly affected. He has a white patch in his hair, ash leaf spots, a small shagreen patch and seizures. He has been seizure free, however, since ! He is smart as a whip, is 11 years old and is the light of our lives! He is 3, lives in Seattle and loves his dog, Banjo. Rob is 38 diagnosed after the kids were diagnosed , Rylee is 14 diagnosed at 18 mo. All 3 kids have epilepsy along with multiple other manifestations related to TSC including brain, heart, eye, kidney and skin involvement. Jake is also autistic with cognitive delay. Each day brings its own set of challenges, but with the challenges comes great rewards and celebrations! He is doing well today, and is learning more and more. Jimmie has a lot of catching up to do, and communication is getting better. Jimmie loves all things John Deere, airplanes and flying from Ohio to Florida. Her IS was controlled fairly early. She has mild learning disabilities. She has been seizure free for 10 years now. Wolford Jr. And Kerry S. Baker Wolford Darrington. Sister of Alyssa M. Grandchild of Roland Wm. Baker Sr. Loved but not forgotten. His seizures are mostly controlled with medicine. Has global delay, two tumours and small seizures which still getting tests on. The nicest, kindest kid I know. Diagnosed at 4 months old with TSC. She continues to amaze us day by day. He struggled for 4 year with seizures of multiple kinds, has Polycystic Kidney disease, and Autism. He has endured countless tests, hospitalizations, and set-backs. Despite all this, he is the sweetest and happiest child in all the world. She goes non-stop from the time she wakes up in the morning to the time her meds kick-in at bedtime. Through it all she loves life, and she loves being with family and friends. She can name a Disney show tune within a few notes, and truly loves all things Disney. She was diagnosed at 8 months of age. She is very slightly delayed with her speech and age level. She is tenacious and she sparkles. James is her brother. Both have TSC. Kristian was diagnosed at 7 weeks of age. Kris has undergone 3 rounds of brain surgery, but unfortunately still has regular seizures, he has very large tumours in his eyes and a SEGA which we are monitoring closely, along with kidney cysts. Diagnosed in utero. He is effected in the heart, brain, skin with ash leaf clouds and angiofibromas and kidneys. He also has autism. He is my superhero. Tyler has just started high school…he has made friends, he has been accepted, he now has confidence. Peipei is with time racing of small Angel, so Pei Pei mother grasp now, live in now, hopes can accompanied Heather Weber Barnesville MN United StatesThis is my son who was diagnosed at 8 years old after many years of doctors visits for different issues. Finally it was all put together as TSC. He has brain, skin and eye involvement. Still in testing for seizure activity, heart and lungs. He is a great boy who loves life and just pushes through the hard times and keeps going. He was diagnosed 10 days before birth due to rhabdomyomas in his heart. He currently has heart, brain, skin and eye involvement. We are trying to control his seizures. Despite all his difficulties he is a happy boy who lights up our home. He is the center of our small family consisting of me, my husband and our 5 year old daughter. Taking on each day as anew adventure. She has come a very long way. She has Autism and slight cognitive impairment. She words part time at our grocery store. She has a smile for everyone. She was diagnosed at 13 months and has tubers in her brain. Fortunately, her seizures are controlled with daily medication. She is doing great as a freshman in Life Skills class at our local high school. She recently won a gold medal in the 50 meter dash and a silver in the softball throw at the spring Special Olympics. Her gold qualifies her for State. She loves to ride her scooter, sing, play the piano and guitar. She loves children and animals. He is a very energetic and upbeat kid with an amazing support system and LOTS of fans. His strength and bravery is a lesson to many. He is a huge fan of Star Wars and video games and He even has a worldwide outreach on his own Facebook page. My mother brought me to the hospital and took a ultrasound. After checking, I was diagnosed as a TSC patient because some calcium spots in my brain. I have seizure also. I have been taken embolism twice in kidney. In these two years, I have a chance to take a new medicine. I deeply appreciate some people who have help me especially my mother. We found out last years. It changed our whole lives. He is doing great however and is improving his speech every day. She loves music and dancing. She has had seizures causing developmental delays. She had surgery in Aug and has been seizure free since! He is now 7 years old living with TSC. We are so blessed to have Texas Scottish Rite Hospital to go to. He tough himself how to do times and fractions in the first grade! I have seizures , target organs, brain, kidney , heart and skin. I am a fighter. He takes Sabril and that has kept the seizures mostly at bay. He is now 22 months and full of life and adventure. He loves being outside or swimming. He is very loving, caring, and fun. Diagnosed at the age of three. Luckily they were able to restart my kidney and they are both functioning fine as of now. She was clinically diagnosed with Tsc at I think 4 months old. She has had good seizure control for about a year now. She also has kidney involvement. She is the bravest girl I know and my greatest teacher. I was diagnosed with TSC after suffering a complex partial seizure in In , I lost the ability to speak and walk. I appear to be a perfectly healthy little boy. Looking at me you would never know I have constant seizure activity. I was diagnosed with TSC when I was 7 months old. I am still the most loving and happy kid ever. I am on a medication to control my seizures but it is dangerous. I have many doctor appointments between my neurologist, ophthalmologist, cardiologist, and pediatrician. I still love every minute of life and make everyone around me smile. Nehemiah is blessed with two older brothers who would move the moon for him. Her seizures are currently controlled by medicine following brain surgery. Danielle also has tubers on her heart, kidneys, eyes and skin. Even though she has tumors on her brain, kidney and skin, Bailey is doing exceptionally well! She takes meds twice daily that have kept her seizure free for 18 months! We Love You Bailey! He was diagnosed at 2 years old after a status seizure and 2 weeks later he was having up to 20 seizures a day: after a tuber resection surgery the daily seizures have stopped!!! Still has fever induced seizures He started preschool this year loves his teachers and has friends that love to ride bikes and play pirates! She has been on almost every possibly seizure med and the ketogentic diet to try and control her seizures. Nothing was stopping her seizures, so in April and May, , Hannah had 2 part brain surgery. She is a sweet girl that loves everyone, especially her baby brother. She was diagnosed at six months old when she started to have seizures, it took a lot of tries on different medications to control them. She has been 11 years seizure free now. She is mentally handicapped, non verbal, has several tubers in her brain, lesions in her kidneys, facial angio-fibromas, ash leaf patches, autism and she is an ovarian cancer survivor. She loves to hear music, to swim, to swing, go to school and plays with musical toys. Tony is a happy person, if he likes you, he will give you a hug. I am two years older than he. When we were little, we always quarral with each other. Mama has been telling the reason ,and ask me to put myself in the shoes of him. I have had this disease since i was 4 months old and i am now She is now a beautiful, funny, smart 9 year old. She is loved. Currently at 2yrs old she is mildly affected with little to no speech, one sega and several lesions on her brain. She is our angel that god blessed us with and we are thankful every day to have her in our lives. I am happy every day. I bring TSC gift for Taiwan. I hope TSC friends enjoy this life. I have epilepsy. When it happen, I feel evil is coming. It always affects my life. I met a new good teacher when I was third grade in elementary. She taught me how to conquer my fear. We prayed together and faced my illness bravely. My parents always tell me TSC is already one part of my life. We need to accept it. When I feel uncomfortable. My grandmother who is standing near me in the picture. She always treat me well. I appreciate what she has done for me. My parents, my doctors, our association. Thank you all! They raise me , love me, teach me. I am pleased to express my appreciation to them. My parents treat me well, we have a happy family. Thank my parents and doctors, thank you all. Watching the photo, you can find my happiness and brightness on my face. Thanks God! Thanks my parents! Thanks Doctors! I appreciate what they have done good for me. I like music, movies,jokes and pranks. My favorite right now is Frost with Elsa and Anna. Elizabeth Navarro Puebla Pue. He is 21 months old! He sure knows how to put up a fight against TSC! He is super affectionate, sweet and unconditionally loving. When he touches your cheek, bumps his forehead against yours and looks into your eyes, your heart feels how incredible he is and your whole body is overjoyed and filled with love. His love is unfiltered, genuine and like no other love I have ever experienced. Jack has always had the most amazing aim which can be good and bad, depending on if he is happy, mischievous or mad! Give Jack a basketball and hoop, and he w Mariya Morgasova Москва г. Москва РоссияMari. Sofi Margarita Sokolova Саратовская обл. РоссияRita Alesiya Malgina Москва г. Москва Россия1. Timofey Nechtalyuk Екатеринбург Свердловская обл. РоссияЗамарина Елизавета г. Город Нальчик. Danil Pokostiyaev Ростов-на-Дону Ростовская обл. РоссияПокостяев Даниил Андреевич , Москва РоссияLola 12 years My littele angel. She goes to school. Enjoying life Kira Popkova Кемерово Кемеровская обл. РоссияПопкова Кира 2,5 г. Кемерово Demid Shegolev Самара Самарская обл. РоссияShegolev Demid РоссияTutaev Arsenii, 1,5 года. Город Сорочинск. He has seizures, renal hypertension, is non verbal, and is cognitively delayed in all areas. Because he is non verbal his life has been a guessing game with regard to his preferences and dislikes, his pain and comfort level. He enjoys eating his favorite foods, playing in water, and attending sporting events especially TexasRangers baseball games. The uncertainty and anxiety of what this condition will do for her future is still not clear, however we have a positive outlook and take it one day at a time. I have Tuberous sclerosis Complex. My mum found out when I was 4 months old because I have white patches on my skin. I have multiple tumours in my brain and kidneys. I take pills to make sure I have no seizures. My mum is trying hard to get some cream for my face but no luck yet. She is not good when she was little. Our mother is a hair designer, she is very busy. So, I need to take care of her from time to time. We love to got there and enjoy music with other TSC patients. We know each other and play together because of our illness. My mother always encourage me to be strong to face every difficult things. Yes, I will try my best to be a useful man in the future. In this awareness month, my family appreciate those who have done good things for us. Always appreciation! Misha Voloboev Белгород Белгородская обл. РоссияMy son is my life! Misha is a very good and kindly boy, he goes to kindergarten and likes ice cream! My mother is supposed to stand me because she love me. Nobody likes this feeling. I like to play guitar very much. We have lots of fun while we are practicing together. My father is sitting besides me in the photo. He works hard for my family, I love him as well. I was born in a family which is filled with happiness. Thanks to my parents, thanks to those who have done good for me. She was diagnosed at 13 months when she began having infantile spasms. She has tumours in her brain, skin eyes and kidneys. She takes meds twice daily that have kept her seizure free for 3 years already. She is the kindest and sweetest girl we know, always giving hugs and kisses to everyone. We are blesses by her life and so glad that she chose us as her family. I have Infantile spasms seriously. My mother accompany me in the hospital about 1 month without rest. I appreciate her beyond words. My father is a strict person. He always teach me how to do, what to do. I love them all. There are 4 peoples in this photo, the left one is my grandma. I love singing, singing can release my angry and find confidence. I appreciate those who have done good things for me. My mother is very poor, she has to take care of me without choose. MaMa I love you, thank you. I always murmur by myself. Always contents, always appreciation. We appreciate those who have helped for us. Thank you again! My daughter is a TSC patient. We have confidence to face this rarely disease. We appreciate those who have helped us. Diana Tihonova Астрахань Астраханская обл. РоссияTihonova Diana 3. Although he has had many challenges, he always faces them head-on with a smile and good sense of humor! With the help of loving family and friends, as well as the support of amazing and committed therapists, teachers and doctors, he is thriving! His life is an amazing adventure and those of us who get to share it with him are the lucky ones! I felt unconfortable in my stomach one day. So I went to see a doctor and took a series of check. After many days, my father encourage me to face it. My condition is not that bad. I took a picture with my co-worker. The sitting one is me. I like to submit my photo here. They will be three in September. Everyday this little hero amazes us. She is severely affected with brain, heart, kidney and skin involvement. She has Grandmal seizures and is Autistic. Despite it all she is a Hero who continues to amaze us every day with her bravery. She is TSC strong! Aleksandra Churmeeva Нижний Новгород Нижегородская обл. Владивосток Alexander Zemcovs Москва г. Россиялычагин валерий 4 года ,оренбургская область г. РоссияБалаухина Любовь г. Губкин Белгородская обл. Ivan Petrov Кострома Костромская обл. РоссияНастя Кошелюк. Chloe Quinn Kildare IrelandChloe was diagnosed at birth with tsc 1. She has no mayor affect other that a patch on her back and a few delvelpment delays. I have a patch on my back which my mother was told at birth was a birth mark. But we are happy and getting on with life. But she triumphs over all of that because of her sweet smile, wonderful hugs, love of singing and joyful personality. Love you, El! Her manifestations include numerous tubers, subependymal nodules, and polycystic kidney disease. Sabril was our miracle drug and stopped her seizures immediately. She has now been seizure free for three and a half years without medication!!! We know the future will likely bring hard times, but Anna has taught us to live each day to the fullest. She is a true TSC fighter and we love her so much! He has lots of disorder which TSC patient have. Even though, I love him so much. He love music. He express his feeling while listening to the music. He cries and laughs when he enjoys the music. I just know something thought in his mind. Thanks everyone has helped us. Diagnosed at 11 weeks of age due to intractable seizures, she underwent a 15 hour brain surgery at 7 months. She went from a documented seizure every minutes around the clock to seizure freedom since surgery! The surgery did leave her with some right sided hemiparesis. She has cortical tubers, subependymal nodules, polycystic kidneys and many ash-leaf spots. Dominik ma 8 lat. Od roku przyjmuje ewerolimus Votubia. Every day is a gift for me Алина Оганесян Вязьма Смоленская обл. РоссияВиктория Клыкова. Солнечногорск Магарита Котова Киров Кировская обл. РоссияEugene Patrickeyev. Город Йошкар-Ола. Like most cases diagnosed since birth. It has inspired us to form a support group in India for all the loved ones affected by TSC. He also suffers from learning, behaviour and sleep issues. Diagnosed at age 4 after a status seizure robbed her of her milestones, she has fought back and worked hard to get where she is today. He is 9 years old and has TSC type 1. My Warrior was born with tumors on his brain and in his heart. He also has tumors behind his eyes and cyst on his kidneys. He started having seizures at 1 week. At 6mths he was diagnosed with epilepsy. Massiah has developmental and physical delays. I was told that he would be mute and mental disabled due to the amount of white brain matter, tubers, and tumors on his brain. Doctors also informed me that he would need a wheelchair Naomi Gillespie Dyer IN United StatesNaomi was diagnosed at nine months after suffering from infantile spasms. She is developmentally delayed due to the effects of TSC. She attends a special needs kindergarten and requires speech, occupational, and other therapies. Christopher, father and also pictured, is the genetic originator but is not receiving treatment. He was having auras and subclinical seizures as a result of TSC. He loves to play piano and organ, to read and study. I LOVE red and green chili! I have TSC in my brain and lost one kidney. Thanks to recent scientific research, I now take medications unavailable to me when I was a child. I recently started taking afinitor for my remaining kidney and the Doctor said one day I might even start talking. She has atonic seizures that are responding to medication. She loves music, art, and crafts. Her seizures are responding to medication. She loves to play with her siblings. She is learning new words and insists on books at bedtime. Until 15 months old when she began having infantile spasms. She now has daily spasm clusters along with partial seizures and tonic clonics. She has been through so much this past year and she has so much further to go as we are determined to stop her seizures. She has a great smile, vibrant personality and is so sweet! Epileptic and autistic. Loves to play basketball, blow bubbles and listen to music. He just finished yr12 at a special school. He has an intellectual disability, epilepsy and pseudo seizures. With the help of his school he has achieved Cert 2 In Retail through the local University. He is amazing at running and he has completed in special Olympics and Oceanic Para-Olympics a few years ago. He is a hard worker and is always willing to lend you a hand. I am extremely proud of him for always trying his best. She has 3 younger sisters and loads of cousins who she loves spending time with. Her favourite things in life are music, singing, chocolate, her family, her best friend Molly, swimming, family holidays, attending school and playing on her iPad. As you can see I am involved in a whole lot of things and TSC is just one part of my identity so be proud to have TSC and remember that this is the thing that makes you unique. He likes outdoor-life, ie. Skiing, canoeing,horse-riding and scouting. Now 14 months old she was diagnosed with TSC at birth. She loves animals and is a happy cheeky toddler. We love her to pieces! Nichole Brown Bowling Green OH United StatesWhile I was pregnant during a normal checkup the Doctor had trouble hearing the babies heartbeat, I was sent to a high risk Doctor for an ultrasound, who told me my daughter had 7tumors on her heart, I was sent to a cardiologist who took a look at my heart and I also had 3tumors, finally after 4 years of knowing I had Demylination in my brain I had a diagnosis of TSC after I delivered a healthy baby girl I began having seizures, we are currently waiting to get into Cleveland Clinic. He brings so much joy to our lives and we all love him so much!! My family has always done our best to raise awareness. We are presently waiting to have brain surgery to remove just one of her tumours! She goes to a SLD school. At her best Beth is a lovely friendly girl but can change in a split second into a really nasty person but life with her makes me very proud. His ability to remember and memorize that which interest him, is remarkable. His 6 yr old brother Dominick, means the world to him and is his best friend. Zachary recently completed a gymnastics class, attempted T-ball but with less success, and is currently enrolled in swimming lessons. Zachary has a fantastic sense of humor most times and is an inspiration to his entire family Nicole Hutchison Ajax ON CanadaMackenzie is a beautiful 14 year old young lady. She is very artistic and loves horses. Mackenzie has a kind heart and gentle spirit that makes her loved by all that meet her. I was born on May 15, , and diagnosed with tuberous sclerosis on July 24, , after showing signs of seizures and being hospitalized for a week. I am now 9 years old, and have been siezure free since I was 3. I am in first grade and I love my school. It has been a struggle, but it has made me and my family so much stronger. Kendall had her first seizure March 12 at 11 months 14 days before her 1st birthday. She does not let anything slow her down and continues to grow just like any other child. She still has seizures on a daily basis. She is in a life skills class in the 3rd grade. She has made some developmental progress. I am mildly effeted and my hope for the future is to find a cure for TSC. He is 9 years old and was diagnosed with TSC the day before he was born. Stephanie Green 33 years — seizures due to tumors on brain controlled with meds , hypopigment macules, shagreen patch, angiofibromas, teeth involvement Naomi Naiztat New York NY United StatesBen is month-old toddler who is full of life. He is social, funny and loves to engage in play with his older brother. Ben has had seizure control for about a year and receives a variety of EI services. He also had PKD. Ben is a resilient little guy who keeps us on our toes. Ever since his diagnosis at 8 months old, our life has been like a roller coaster. We are blessed that he is doing well. He has a tough case being nonverbal, autism, severe intellectual delay, tumors in his organs, etc. He is happy though and we love him and putting our efforts into finding the cure! He loves playing baseball and riding horses. Such an amazing inspiration and ray of sunshine for anyone that meets him!! He was diagnosed with TSC at age 3, when he developed facial angiofibromas. Seizures started soon after, but they have since subsided and, at age 8, he no longer needs medication. I love to ski and swim, and my favorite hockey team is the Montreal Canadians. She is developmentally delayed, but we fight to give her the best chance of living independently one day. She is a sweet girl and truly a ray of sunshine in our lives. My daughter, Celeste is 6 years old with a intellectual learning delay, multiple ash leaf and shag green patches. She has 10 tumors in her brain, 3 cardiac rhabdomyomas, 2 tumors in her kidneys. She takes 3 seizure medications daily to maintain seizure control. Rylee takes dance lessons and loves swimming! We wear blue for you, Rylee! She was diagnosed with TSC at 4 months of age when we notice white spots on her skin which prompted visits to many specialists. Her MRI showed 5 tubers in her brain and an echo showed a cardiac rhabdomyoma. She is doing great! Loves to sing and dance and is the light of our lives. She is epileptic and taking 6 combinations of anti epileptic drugs. She goes to special school and her verbal skills severely affected bad. She was the first child diagnosed with TSC in Brazil. Her mother runs for 15 years the Brazilian Association of Tuberous Sclerosis, helping other people around the country with the Complex. He inherited it from his father. At 3, the bottom fell out though. Kade is now 9, he has been in the psychiatric unit 10 times since he was 3. He has over 10 psychological disorders, a brain tuber, learning disabilities, and we recently found out he has some hearing loss. He has TSC and Autism. She has brain, heart, kidney, skin and eye involvement. She is globally delayed. Emma has daily seizures and is on numerous medications to help improve her quality of life. She is a fighter! We are so thankful for all the research that has found medical treatment and interventions that have helped her through this journey. Никита Толстов Михайловка Волгоградская обл. РоссияНаш Никита самый светлый, радостный особенный ребенок. Ребенок Бога. Ему надо уделять все свое время, но это стоит того, когда он начинает меня понимать, улыбаться и протягивать руки, что бы обнять меня. After many seizures her doctor decided to do an MRI of the brain where they found multiple tubers in her brain along with a Sega tumor. She also had tumors in her heart, hemartomas in her eyes as well as the white marks on her skin. She was also diagnosed with epilepsy and at the age of 4 she was diagnosed with Autism. Through it all she continues to amaze us with everything she has overcome and conquered! She ill since birth. Is epilepsy drug-. Does not say. It is very joyful, cheerful child. We have tsc, but it does not have us! I was diagnosed with TSC as a baby. I have battled seizures all my life but I have never let it stop me! I love sports, camping, traveling, dancing and playing with my friends. I have great teachers in school that help me accomplish my goals. I love to draw and sing and play with my dogs. I am a happy kid! She is the sweetest heart you will ever meet and genuinely loves life. This little man is my Hero!! Between the two of them, we have experienced seizures, autism, developmental delays, brain surgery each , kidney involvement, anxiety and depression, just to name a few of the most serious issues. I was diagnosed when I was 6 months old because I was having infantile spasms. I attend a great day program during the day and evenings and weekends I hang out with mom and our 2 cats. I am TSC, and I am loved. She was diagnosed with TSC at 6 months when she starting having seizures. We now know that she has lesions in her eyes, skin, kidneys, and brain. Heather never slows down though. She is a wonderful little girl and the joy of our lives. I have involvement in my brain, heart, kidneys and skin. I am the happiest little boy you will ever meet. Jamison was diagnosed 17 years old, Zander was diagnosed at 6 months old. They love to fish, play baseball and have bonfires!! They are my superheroes!!! Although he has all the physical aspects of TSC, by the grace of god his symptoms are very minimal. Tyler doesnt let TSC be an obstical in his life. Hes still a star athlete and a rolemodel for his peers. Im proud to be his mother. We can all learn from children how to handle what we can not control. Her TSC is very involved. She had brain surgery at 8 mo and again at 10yrs. She is non verbal and her cognitive level is yrs. We love this girl so much. She has inspired us to live more meaningful lives, to love deeper and to appreciate the little things. Whoever meets her can feel how truly special she is. She tries so hard everyday to be the best she can be. She is a hero to her family and we could not love her more. She is a true TSC warrior. We love our TSC warriors! At a week old, she had a pacemaker placed to help her heart. At 4 months, she began to have seizures, which turned into infantile spasms. At 2 years old, they removed her left frontal lobe. She was seizure free for a year. She is on the Autism spectrum, non-verbal, global delays. She is 9 years old and is the most courageous and happy person I know! He was put on Sabril for a year. He was seizure free for a few years. In , he had a seizure and was put on seizure meds again. He has been seizure free since then. He is behind some on learning but has an imagination out of this world and is so sweet. He can beat a video game in no time flat! I do have a few in my lungs very small case of it Thank Goodness. His live is really hard now because of his autism. So he is often verry sad and harms himselfs. But we love him and are so proud to be his parents. Our beloved son!!! I love to read books and play with Peppa Pig toy. Greetings from Lublin, Poland! We are so lucky to have her in our lives and cherish every day with her. Diagnosed 2 days prior to birth. First seizures at 1 month. Has brain, heart, eye kidney and skin involvement. Functions as a VERY happy yr old! Born with TSC. Involvement in almost all of my organs. After all that I have conquered in my life I am finished with my 3rd year of college. I am a fighter and I will never let TSC bring me down! Diagnosed at 10 weeks. With intractable epilepsy, autism, kidney angiomyolipomas, retinas, skin involvement, he has plenty of challenges ahead. Still, he works hard every day to learn to communicate and inspires love everywhere he goes. Matthew Comeaux United StatesMatthew is 15 years old and enjoys watching railroad crossing bars! She has brain and skin involvement. She is the light of my life along with her twin brother, John, and her older brother, Jake. He loves all kinds of music on his IPod. Justin also likes to be outdoors and ride his bike. He was diagnosed when he was 3 months old with the onset of seseizures and infantile spasms to follow. Justin brings many smiles and happiness to everyone he meets. My hero! At 6 months, he was diagnosed with TSC. In Jan , we found 3 tumors forming in his brain. The most recent diagnosis leaves our family unsure about future complications. Even though the future is uncertain, we are putting our complete trust in God. We know He has amazing plans for our rambunctious little guy! Aaron Dillon aka. Dx with TSC 1 yr old, shortly after seizures began. Has brain, kidney, eye and skin involvement. Diagnosed with Autistic Disorder before he turned 3yrs old. Had brain surgery 7 yrs old. Struggles with self injurious behavior at times. He is moderate- severely affected by TSC. He functions as if a yr old. He was diagnosed in utero by the cardiac rhabdomyomas. He loves to sing and play basketball and his older brother just taught him how to ride a bike. We are so proud of him! He always has a smile on his face!! I am an avid volunteer in reviewing research proposals from an adult perspective and enjoy rolling up my sleeves and helping and meeting new individuals and families. I also try and mentor people in self-advocacy and am a former member of the Board of Directors. She never will be. Has ups and downs but is full of so much love. She has tubers scattered on brain and is struggling in her ESE classes. Has eye issues not sure if connected to tsc. He had intellectual delays, behavior, adhd, autism, kidney involvement, resection surgery at 7yo and is now He is generally happy, empathetic and social. He will not live on his own but will be successful in some group living situation. Saltillo Coah. She had about 13 rhabdomyomas but now she only has a few and no heart problems. She has many of the manifestations of TSC. She has 27 tumors in her brain, suffers from seizures daily, autistic, delayed as well as having tumors in her eyes, kidneys, jaw, hip and all of the skin manifestations! BUT she is a really goofy, loving 16 year old and her smile is contagious! David antonio Vazquez Jal. She was diagnosed at 8 months after seizing from her DPT shot. Jackie loves to go to the firehouse and help out and play softball with our team. Jesus rafael Uicab Q Espita Yuc. Has tubers in his brain. Delay in speech and has learning difficulties but he is always be our hero. At 4 years old now he can sings twinkle twinkle star. She is turning 5years old in a few weeks, and is a wonderful little girl. One desease to be fought, one thousand hopes to share! We miss her every day. Susan Seggerman Salinas CA United StatesKylie is 11 years old 12 on May 30 , but developmentally about 5 years, except for a few tween characteristics. Peipei is with time racing of small Angel, so Pei Pei mother grasp now, live in now, hopes can accompanied. Heather Weber Barnesville MN United StatesThis is my son who was diagnosed at 8 years old after many years of doctors visits for different issues. I am so proud to be his father. Aydan oakes Crewe England United KingdomAydan is such a lovely loving little boy, and really makes everyone feel special! I also am expecting a baby boy this July and at this moment TSC is unknown for him we will be going in. Give Jack a basketball and hoop, and he w. Mariya Morgasova Москва г. Aliya Sharipova Татарстан Респ. Татарстан РоссияAliya 7 year. Sofiya Sitnikova Краснодар Краснодарский край Россия11 year. Margarita Sokolova Саратовская обл. Alesiya Malgina Москва г. РоссияNechtalyuk Timofey 1,5 Ecaterinburg. Liza Zamarina Мурманск Мурманская обл. Lola Kenzhaeva Москва г. Enjoying life. Kira Popkova Кемерово Кемеровская обл. Demid Shegolev Самара Самарская обл. Indira Faizulina Уфа Респ. Arsenii Tutaev Оренбургская обл. Elisaveta Bykova Ульяновск Ульяновская обл. Liza Kalandina Санкт-Петербург г. РоссияChurmeeva Aleksandra, 9 years,. Alexander Zemcovs Москва г. Михаил Алмазов Санкт-Петербург г. Виталина Артеменкова Орёл Орловская обл. Россия Artemenkova Vitalina, 2 years, Oryol city. Andrei Vasilev Санкт-Петербург г. Artem Mazhurin Тула Тульская обл. РоссияMazhurin Artem 10 months in Novomoskovsk, the Tula region. Alexandra Klimova Москва г. Москва РоссияKlimov Alexander, 19 years old, Moscow region. Dima Kakadei Тольятти Самарская обл. РоссияKakadei Dima, 5 year, Togliatty, Russia. РоссияShegolev Demid 1,9 year Samara. Николай, Баранов Магнитогорск Челябинская обл. РоссияБаранов Николай, 4 года, город Магнитогорск. Любовь Балаухина Белгородская обл. Rhianwen Solise Hanson KY United StatesLillian is a strong, loving, and courageous five year old girl who never misses an opportunity to jump in a muddy puddle or cuddle any animal that she comes across. РоссияPetrov Ivan, 21 years, Kostroma. Artem Chupin Магадан Магаданская обл. РоссияChupin Artem, 5 years, Magadan. Настя Кошелюк Екатеринбург Свердловская обл. Kseniya Pavlova Ростов-на-Дону Ростовская обл. РоссияPavlova Kseniya, 5 years, Rostov-on-Don. Every day is a gift for me. Алина Оганесян Вязьма Смоленская обл. РоссияОганесян Алина город Вязьма 2г. Давид Гурский Россиягурский давид 6. Алина Неженцева РоссияНеженцева Алина. Виктория Клыкова Калининград Калининградская обл. Мария Клейман Екатеринбург Свердловская обл. РоссияКлейман Мария, Екатеринбург. Валерия Боброва РоссияБоброва Валерия,9 лет г. Магарита Котова Киров Кировская обл. РоссияКотова Маргарита 10 лет, город Киров. Город Ижевск. Евгений Патрикеев Пенза Пензенская обл. His epilepsy is not controlled but this does not stop him , love him xxx. Doctors also informed me that he would need a wheelchair. MAC 13 years old. Beth coles Bilston England United KingdomBeth is 18 and was diagnosed at 7 months, she has daily seizures, challenging behaviour, tumours on her brain, heart, kidneys and skin! Zachary has a fantastic sense of humor most times and is an inspiration to his entire family. She is developmentally. She does her daily activities without any issues. I had brain surgery before my first birthday. Obecnie od 3 lat na Votubii. Over the years he has taught us to appreciate what we have and not to sweat the small stuff. Andrea Benarano Jal. Iker Palma duran Valladolid Yuc. Maria jose Ribero Actopan Hgo. Frida hu Gamboa Yuc. Very proud of him…. Ryan lives with the following manifestations of TSC: brain tumors, cognitive delay, seizures, Autism, ADHD, Mania, angiofibromas, ungual fibromas, and angiomyeolipomas. He was diagnosed the week of my first birthday when he started having seizures. School was sometimes hard for him. My two big brothers are great! Lismore, NSW Australia. Darwin, NT Australia. Maroochydore, QLD Australia. Port Lincoln, SA Australia. Melbourne, VIC Australia. Camperdown, VIC Australia. Perth, WA Australia. Belo Horizonte, MG Brasil. Calgary, AB Canada. Grande Prairie, AB Canada. Kenora, ON Canada. Windsor, ON Canada. Ajax, ON Canada. Sudbury, ON Canada. Toronto, ON Canada. Frankfurt, HE Deutschland. Schwerin, MV Deutschland. Datteln, NRW Deutschland. Lannoy, Nord-Pas-de-Calais France. Bengaluru, KA India. Laveno-Mombello, Lombardia Italia. Merano, Trentino-Alto Adige Italia. Saltillo, Coah. Actopan, Hgo. Los Reyes de Salgado, Mich. Puebla, Pue. Playa del Carmen, Q. Valladolid, Yuc. Espita, Yuc. Hoorn, NH Nederland. Strijen, ZH Nederland. Greytown, Wellington New Zealand. Bydgoszcz, kujawsko-pomorskie Polska. Lublin, lubelskie Polska. Warszawa, mazowieckie Polska. 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Петропавловск-Камчатский, Камчатский край Россия. Кемерово, Кемеровская обл. Киров, Кировская обл. Кострома, Костромская обл. Анапа, Краснодарский край Россия. Краснодар, Краснодарский край Россия. Магадан, Магаданская обл. Люберцы, МО Россия. Мурманск, Мурманская обл. Нижний Новгород, Нижегородская обл. Оренбург, Оренбургская обл. Орёл, Орловская обл. Пенза, Пензенская обл. Пермь, Пермский край Россия. Владивосток, Приморский край Россия. Уфа, Респ. Башкортостан Башкортостан Россия. Татарстан, Респ. Татарстан Россия. Сыктывкар, Республика Коми Россия. Якутск, Республика Саха Якутия Россия. Ростов-на-Дону, Ростовская обл. Самара, Самарская обл. Тольятти, Самарская обл. Екатеринбург, Свердловская обл. Вязьма, Смоленская обл. Тула, Тульская обл. Ижевск, Удмуртская Республика Россия. Ульяновск, Ульяновская обл. Магнитогорск, Челябинская обл. Алчевск, Луганская область Украина.