Member Support Services Links
Affected Adult Resources
Opening Doors A Housing Initiative for the Disability Community
Gastrointestinal
PAGER: Pediatric/Adolescent Gastroesophageal Reflux Association
General Resources for Parents and Affected Adults
Family Center on Technology and Disability – Assistive technology works!
National Resource Center for Respite & Crisis Care Services, ARCH National Respite Network
Grief and Bereavement
Medical Resources
Multilingual Glossary of Medical Terms
Siblings
Parent Networks and Resources
Chai Life, Fighting Illness with Love
Exceptional Parent Magazine Online
If you have developed a web page for a child with one of the Allied Diseases, please contact us, so we might add it to this list! Want to make one?
Canavan
| Ariel Coover | |
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Ariel Coover has Canavan Disease. Canavan is a progressive, degenerative brain disease for which there is no cure or effective treatment. Death usually occurs within the first decade of life though there are some who have lived into adolescence and early adulthood. Children affected with Canavan usually have very low muscle tone especially in the neck which results in... |
GM-1
Lilie Clark
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This is a story about a one year old angel named Lilie Elisabeth. She has exceeded the things they thought she wouldn't and continues to prove everyone wrong. Her journey starts on the day she was born.... |
| William Marquardt | |
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William was born on July 7, 2005 tipping the scale at 9 lbs 8 oz. He was a healthy, content baby boy and during the first year of life, continued to grow and develop as any other baby. At 9 months, I noticed William slouching slightly when he sat up. I took him to his pediatrician and was told that nothing appeared abnormal and... |
| Megan Mullaney | |
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Megan was born a normal, happy baby. She was, however, afflicted with a rare and terminal lysosomal storage disorder called GM1 Gangliosidosis. As she grew up, Megan faced so many struggles due to her illness. She suffered from a developmental delay that frustrated her. She was never able to talk. She didn't have the ability to crawl or even hold her bottle anymore. She lost her ability to see. But as she struggled with these things, she... |
Cooper Wilson |
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Cooper is our precious little boy. He was born 6 weeks early, but he was healthy... 10 little fingers, 10 little toes, piercing blue eyes and the cutest little crooked smile. His development was slow, but we were told that preemies are often delayed and he would catch up. We were encouraged to give him time. When Cooper didn't roll over at 7 months, couldn't sit up and was still having trouble with head control, we were worried. Cooper was diagnosed with hypotonia and we began an intensive therapy program 3 days per week to ... |
Mannosidosis
| Taryn's World..and Welcome to it! | |
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A special place for special kids. |
Metachromatic Leukodystrophy
| Vanessa Sanchez | |
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A special little girl. |
Niemann-Pick Type C
| Jacob Quinn DeMeis-Dullea | |
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... a most courageous young warrior who lost his battle against Nieman-Pick Disease Type C |
Sandhoff
| Zachary Bloomfield | |
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Zachary David Bloomfield was born on September 29th 2004 and earned his wings on November 8th 2006. He was a very fun loving lil man. He fought for all it was worth. He was my lil pooh bear. He has an older brother, Allan Ellsworth French. Allan thought the world of his lil brother. Zach was the life of every party the minute he came through the door everyone wanted to hold Zach. He attended church on Sundays when he was well enough. To say the least if I had it to do all over again I would do it in a heart beat but so would all the other parents. |
| Cheyenne Noel Caincross | |
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Cheyenne was a very happy little girl. She would always flash a smile for her Daddy and her big brother and sister could get her to laugh. Even up to just days before she entered Heaven’s rest, she had times of smiles and giggles. We know that Heaven is brighter because of her smile. |
| Zachary Gibson | |
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ZACHARY, YOU ARE MISSED AND LOVED SOO MUCH June 1st 2001- January 20th 2005 Dear Zachary ~ After all the pain after all the suffering it’s finally over Zac. Even though we can’t see your long eye lashes and... |
| Isabella Giovanna Rain Hernandez | |
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Isabella Giovanna Rain Hernandez was born on June 26th, 2003, but it wasn’t until March 13th (just three days ago) that our beautiful baby girl took her first steps. For the first time, Bella (as she was known to us) ran…. she giggled, she played, she twirled around in all the pretty dresses her mommy always put her in, she tapped her toes and fed herself and she probably even through a fit. When she got to heavens gate, she was greeted by her sister Ashley, her aunt Cordelia, her cousin Dominic and all the other angels that have gone before her. We find comfort ... |
| Emily Koltonski | |
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When Emily was finally diagnosed with Sandhoff disease (she didn’t get a diagnosis until she was 3 & ½) Michael and I really needed some sort of idea of what to expect. The doctors of course couldn’t tell us, no one could. Sandhoff and its related diseases have “typical” courses they take, but not something that can be easily predicted. We spent... |
| Brooke Pulham-Labedzki | |
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Brooke had Sandhoff Disease and it slowly stole her life. There is no cure. 15th of March 2006 - 12th of March 2008, an angel just in time to enjoy her 2nd birthday party like every child should.... |
| Shane Medrano | |
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Shane Medrano was born Tuesday, April 16, 2002. He passed away on Tuesday October 17, 2006 from Sandhoff Disease. He was 4.5 years old plus one day. Shane had excellent care while he was here and a family who loved him very much. Read more about his story... |
| Riley Nicole Luce | |
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Riley Nicole Luce was born September 27, 2002. She is the daughter of Dave and Nicki Luce. Riley and her parents live in Coldwater, Michigan. Seeing a slow regression and not obtaining several milestones after 9 months, Riley was put through many tests. However, a simple eye exam which found... |
| Joey & Clayton Mulligan | |
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Hello, my name is Joey, and I am a very special little guy. I was born on Friday June 30, 2000 at 8:30 p.m. My parents couldn't have been more proud of me. I seemed to be a normal baby. I would smile and giggle at everyone, but I never really sat up on my own. I rolled over a couple of times, but didn't do the rolling for very long. When I was about nine months old my uncle Dusty came in to... |
| Teresa Villalpando | |
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Hi my name is Liahla Roberts-Valdez. I have six children. My youngest was just diagnosed with Sandhoff disease. She is eleven months old and her name is, Teresa Villalpando. Teresa is so very beautiful in all her ways. She has the brightest smile I have ever seen. She is always happy and content and oh so forgiving. The doctors often refer to her ... |
| Conner Watkins | |
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I am in Heaven now.... I lost my battle with Sandhoff disease on March 13th 2004 just 17 days before my 4th birthday. Sandhoff Disease is a rare and always terminal type of lysosomal storage disease that is genetic, there is no cure at this time/ To read more about what Sandhoff disease please go to www.sandhoffdisease.webs.com -- And join the Hide and Seek Foundations crusade on education and... |
Juvenile Sandhoff
| Amanda Callagy | |
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Amanda Callagy has always been an active, normal child. While growing up, she had some minor hand tremors and her parents thought she was a little “clumsy” at times, but she still excelled in sports, cheerleading, bike riding, etc. Just about six years ago, when she still lived in ... |
Sibling Site
| Cailee and Cayden | |
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Hi Im Cailee and I am () years old :) and I love to swim and go to the beach. I love my friends, and it never matters whats on the outside of people its what is in the inside that counts. I am looking forward to summer which means NO SCHOOL and going to the beach alot. Hi Im Cayden and I am growing like a weed these days. I am starting to potty train now, and LOVE to swim! I love to be everywhere my sister is, even though it drives her crazy :)- |
Tay-Sachs
| Amelia Alford | |
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Our sweet little girl, Amelia, was born with Tay-Sachs disease. Tay-Sachs is a neurological metabolic disorder that's degenerative, progressive, and fatal. Amelia is 22 months old and has a 5 year-old big sister, Madeline. We live in the San Francisco bay area. Amelia, was born September 29, 2006. She was an easy baby right from the start, coming two weeks early. My pregnancy was totally normal, including all.. |
| Charles Lee Anderson | |
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Charles Lee Anderson was born on February 26, 2006 to Bryce and Amy Anderson. His sister Anna was 14 and brother Ben was 11. Charles Lee was so perfect. None of us could imagine that anything was wrong with him. He was so precious and beautiful. |
| PJ Arbogast | |
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This year will be the hardest - the first without her. For almost 4 years, I held PJ tightly, believing that I could protect her from the disease. I thought silly things like, "If I can keep her ferns alive, I can keep her safe too." But on 12/3/06, the harsh reality of things came to pass; and our baby was taken from us. But she's not gone! She's only gone if we forget. Think of her, and remember how she changed your heart. Give her life meaning and help us realize a world without Tay-Sachs. |
| Elise ten Berge | |
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Elise ten Berge was born on February 5, 2003. She was our first child and as all new parents do, we thought about what Elise’s future would be like: her first word, her first step, and her first day of school. Little did we know that Elise had a degenerative disease called Tay-Sachs which was already ravaging her central nervous system. Elise would never have a first word, first step or first day of school. Elise appeared completely normal at birth and reached the developmental milestones she should have for... |
| Isaiah Cairns | |
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On March 16, 2007, Isaiah came into the world at 9:41 PM weighing 8 lbs. 6 oz. he was greeted by his daddy, Grandma Lisa, and Great Aunt Chaundra. He soon had the pleasure of meeting his older brother, Ethan who, by the way, just turned two in December! He was the picture of health and the star of the nursery! Isaiah came home from the hospital with hand-made blankets, hats, and booties. Although he was very quiet and peaceful in the nursery, he ended up being a very colicky baby and cried for close to four months! Despite his cranky disposition... |
| Timothy Carter Jr. | |
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Timothy Carter, Jr. received his wings in March, 2006 after a brave battle with Tay-Sachs Disease. He was just shy of his 4th birthday. His baby brother and his parents Angela & Tim live in Tulsa, Oklahoma. |
| Carmen Coddington | |
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We started the adoption process in January 2006 and brought 5 ½ month old Carmen Alesandra home from Guatemala in January 2007. Carmen’s adoption story is amazing! We hope you take a moment to read about how she came to be in our family and the miracles that occurred along the way. Like her big sister, Carmen is a gift, a blessing in our lives. Carmen is teaching us... |
| Travis Cole | |
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Hi my name is Travis Cole Snellgrove and this is my story. I was born on April 12, 2004 and I was a healthy boy. M y mom and dad were so happy I was so smart and did every thing on time. My mom told me not to grow up fast that she wanted me to stay a baby because my brother grew up way to fast. So she did not push me like she did my brother. When I was 3 months old I learned to roll over and was trying to sit up. When I was about 5 months old I learned to say daddy. When I was 6 months old I still could not sit but I could still roll over so... |
| Alejandro Diaz | |
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La enfermedad de Tay-Sachs y la enfermedad de Sandhoff son males hereditarios que afectan el sistema nervioso central. Ambas enfermedades presentan los mismos síntomas pero son causadas por mutaciones (cambios) en diferentes genes. En una de sus varias formas, estas enfermedades afectan a los bebés y son fatales. |
| DJ | |
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DJ was born in the year of the ox in the Chinese calendar (1997). He was a sweet, good-natured baby. He learned to sit at the age of 5 months. He started taking solid foods by 5 1/2 months. He never particularly liked the bottle, so he switched directly to a sipping cup. His first tooth came in when he was 10 months old. He wore his first pair of shoes on his first birthday. He loved to play ... |
| Rachaeli Fier | |
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Rachaeli entered this world with her eyes open wide; God delivered her to us shortly before the start of the Sabbath on Friday October 25, 2002. It was a perfect delivery following a perfect pregnancy. Rachaeli was absolutely captivating. We marveled as we lost ourselves in the depth of her wide brown eyes; they were magnificent windows to an old soul we?d been waiting and training all our lives to love. Enveloped in her mother?s tight embrace, our fourth child scanned the delivery room, as if trying to locate her 3 brothers. She knew her stay... |
| Madison Gerber | |
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Hello, and welcome to Madison's website. Madison is a beautiful 10 month old living with Tay-Sachs Disease. It has been extremely diffucult to deal with and we appreciate all the support we are getting. Please continue to check for updates through her jouney and leave Madison or the family a little note. |
| Conner Phillip Hopf | |
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Conner a precious miracle, an amazing creature sent to Carl, Brenden and myself, one cold snowy January day. From the second he entered our life, I knew in my heart he was so incredibly special. His first smile, his first cry, even his first breath, he was, and remains beautiful. Conner is such a sweet, loving, and happy boy whose smile lights a room. His eyes have an amazing twinkle that makes me melt. Conner was the picture of health, so strong, so beautiful. He has given us countless hours of smiles and cuddles and a lifetime of love. When Conner was... |
| Molly Grace Jordon | |
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Molly Grace was born on September 26,2003. She was born 2 months early and weighed only 4lbs 0oz. Although she was so small she was very healthy. After only 2 and a half weeks in the hospital we got to bring her home. I noticed early that Molly's milestones were behind, but her Dr. kept saying she was delayed because of her being premature. Deep down I had a gut feeling it was something else, I guess it was a motherly instinct. As Molly got older, she became .. |
| Krystie Karl-Steiger | |||||||
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My partner Rick and I have always wanted to have a child. Although, the process had been fairly challenging for us, we never gave up. After 3 years and 8 surrogacy attempts, we were blessed with a beautiful baby girl, Krystie Anna, born on 1/26/06. Krystie appeared perfectly healthy and developed normally for the first 6 months. We took her on vacation to Provincetown, MA in the summer of 2006 and had a great time. However, after we returned from that trip, we noticed that things started to change and .. |
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| Kaiden Lear | |
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I was born on december 20, 2006. i weighed 7 lbs 6 oz and my mommy said i had 'big ol legs'. i have a big sister, her name is kaylee and she is my best friend. two months ago my mommy gave me a little sister, her name is layla and her crying doesnt bother me much. I love ... |
| Dylan Manning | |
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Dylan James Manning (commonly referred to as “DJ”) was born on Thanksgiving Day, November 22, 2001. Dylan’s arrival was a long awaited event for his parents, Brian and Sherri of Atglen, Pennsylvania. Although Dylan was anxious to arrive almost four weeks early, he was not quick to reach his milestones. Doctors naturally gave him a little extra time to reach... |
| Gabriella Mazer-Rogers | |
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I was born in November of 2002. I was a happy and healthy baby. When I was 6 months old I went to live with my Great Aunt Lisa and Great Uncle David. I was growing like a weed and learning all the skills a baby should. I had so much fun running around the living room in my walker. You could also always find me with my favorite rattle. I loved holding it in my mouth and spinning the ball. I always drooled a lot but we ... |
| Brandon Castillo Nava | |
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All my life long, I have received lots of love from my family and friends. Here you will find every drawing, present and news report I have received. |
| Emma Rose Rabinowitz | |
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Emma Rose was born on May 17, 2004. She was a beautiful, healthy, and sweet baby. We were so thrilled for her to join our family especially to develop a special bond with her older brother, Jake. Emma developed normally for the first 5 months. She rolled over at 4 months, and began sitting up at 5 months. At 6 months, she was sitting unassisted, but still unsteady. She rarely reached out for toys... |
| Ruben Suarez Jr. | |
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In January, 1998 our family was blessed with the birth of our first child, Ruben Suarez Jr., "R.J." Tragically our beautiful son was recently diagnosed with a terminal illness called Tay-Sachs Disease (TSD). Tay-Sachs is a rare genetic disorder that results in a deterioration of the central nervous system. Currently there is no known cure ... |
| Elise Ryne Rochman | |
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Elise was born December 1, 2004. An absolutely perfect baby born after an easy pregnancy. We never imagined we could love someone as much as we love Elise. The next 6 months were the happiest months of our lives. Elise was a very happy and content baby - she loved to fly on airplanes - there was never a flight that she didn't get a compliment on. Around 7 months Elise still hadn't learned how to sit up, we were concerned, however, everyone said not to worry about it - babies learn at their own rate. Elise had a well baby check up ... |
| Camilla Delgado Recalde | |
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Camilla Delgado Recalde was born on November 9, 2002. She lives in Pasto (Nariño) Colombia South America with her mommy Angela , daddy Alex and siter Emili. Camilla will be turning 5 on November 9, 2007! Site is in Spanish |
| Lacie Wivell | |
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On April 8, 2004, we were blessed to welcome our daughter, Lacie Ann, into our family. Lacie was everything we expected. She looked exactly like her brother, Colby. Lacie developed as a typical newborn would. At four months, she was rolling over from stomach to back and back to stomach. At five months, she started sitting on her own with some assistance. Each month’s check up she seemed to be progressing as normal. Around her six month birthday, we noticed Lacie was not focusing her eyes as she should have been. I brought my concerns to the pediatrician at her six month check up. At that time, the doctor did not see much ... |
Juvenile Tay-Sachs
| Dakota Bihn | |
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On September 1, 2005 we received horrible news about our daughter, Dakota. She was diagnosed with a rare disease called Juvenile Onset Tay Sachs. This disease is very rare and terminal. On January 3, 2006 Dakota will be going to Duke University Medical Center for a Cord Blood Transplant. Since the diagnosis we did all that we could to educate ourselves on how... |
| Bianca Anne Candy | |
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Hello, my name is bianca, i was born in july 2000, i developed well until around the age of two, mum and dad noticed that i wasn't reaching any new milestones, my walking was starting to be abit off balance and my speech was starting to go, i had a little bit of reflux, so mum and dad took me to see… ... |
| MacKenzie and Spencer Frechette | |
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MacKenzie was born May 29th, 1993 and Spencer July 28th, 1995. Completely normal infants and toddlers...even into preschool and 1st grade. Then things started to change. Very subtle changes that no one could really put their finger on because they were still developing somewhat normally. It was almost as if they were having ... |
| Lexi Markowich | |
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Lexi was a beautiful healthy baby, born March 9, 2001. She was so happy and made everyone want to smile. She was so unaware of the awful disease that was destroying the cells in her brain. Six days after our diagnosis (she was four) we found Dr. Kurtzberg online. We went from no hope, to hope to give Lex some quality of life. What quality we did not know, Lex was the first ... |
| Gavin Marquez | |
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A cold, autumn night on November 13, 2005 marked the day of new beginnings for Jan and Ferd as they welcomed their first born son, Gavin Cole, into this world. The moment was precious and sacred. He was truly an angel sent from heaven. Gavin was always a happy-go-lucky baby who was very easy to please. Books by Eric Carle, Elmo, Barney and lots of push toys, to name a few, were some of the things he absolutely loved. As Gavin grew, he never quite followed the typical milestones of an average baby. He started to walk at 16 months of age, but was always floppy and had... |
| Isabela Roman | |
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Isabela has inspired me in more ways than I ever thought possible. I have learned from her love, strength, and courage. I am the lucky one to have been chosen to have her in my life. With her I realized that life is too precious and we so often take it for granted. Suddenly, I have taken my glasses off and realized what I have been missing. Memories are the most important things in our life and sometimes... |
Friends of NTSAD
| Liz Warren | |
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I learned about Tay-Sachs Disease on 9/10/05. My mission is to help educate until a cure is found! |
Carrier Couples
| Kornblum Triplets | |
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I can't believe the boys are 8 1/2 months old (almost 9 months on May 22). They are all so good. They eat rice cereal and fruit or a vegetable three times a day (plus their four bottles a day). They are all sleeping through the night and take two good naps during the day. They all have very good dispositions and rarely fuss. They still spit up a lot, but we... |
Three options for free personal websites! PSG members have two options for creating free personal websites for their affected loved ones: Gina Watkins, CarePages and CaringBridges.
- Gina has been a PSG Member since the fall of 2001. She lost her son, Conner, to Sandhoff disease in March 2004. Gina has created a very informative website focused on Sandhoff and various aspects of the disease. To learn more about her web services, go to www.sandhoff.org and click on website information on the left.
- CarePages are free, personal, private Web pages that help family and friends communicate when someone is facing illness. NTSAD recommends CarePages over CaringBridges because CarePages donates $10 to NTSAD for every active page created and it also allows for more photos on the website. Visit William Marquardts’s CarePages site above. Create your own site at
http://www.carepages.com/ntsad. - CaringBridges offers free, easy-to-create web sites that help connect friends and family when they need it most. Visit Elise Rochman’s, Dakota Bihn’s, and Alexis Markowich’s Caring Bridge sites above. Create your own site from the homepage in three simple steps at www.caringbridge.org.
Specialty Products
Special Needs Toys, US + UK, France
Social Security related links
Centers for Medicare and Medicaid Services
Wish Granting Organizations
Every child should have an opportunity to realize their dreams; these organizations offer financial support to help families of terminally ill children do just that. Please note that each agency sets their own eligibility guidelines and some have very strict minimum age requirements for participation.
Brass Ring Society Children's Wish Foundation of Canada Dream Catchers USA
Starlight Starbright Foundation