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Golf Fore Grayson! May 8th 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.endaxd.org/news/governor-lee-got-to-meet-some-really-special-kids monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1736352152390-TBMUSCFB3H315CWXM2DZ/52213312362_7722098e13_o.jpg News - Governor Lee got to meet some really special kids! https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1736352152417-0TWSIOMCCWSBJC91HO46/52214334523_8a47ca4032_o.jpg News - Governor Lee got to meet some really special kids! https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1736352153151-P1745C30MC1RRHK6HNNI/52214596469_6a7daa2811_o.jpg News - Governor Lee got to meet some really special kids! https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1736352153238-8TMA34W1QDAN12WPY8NF/52214803040_4feb919505_o.jpg News - Governor Lee got to meet some really special kids! https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1736352153966-5SCHVEWFHROVJ5PYM21K/52214803205_79b9946258_o.jpg News - Governor Lee got to meet some really special kids! https://www.endaxd.org/news/promising-treatment-for-alexander-disease-moves-from-rat-model-to-human-clinical-trial monthly 0.5 2025-01-08 https://www.endaxd.org/news/new-community-statement-on-the-alexander-disease-program-from-ionis monthly 0.5 2025-01-08 https://www.endaxd.org/news/clinical-trials-for-alexander-disease-have-begun monthly 0.5 2025-01-08 https://www.endaxd.org/news/welcome-to-end-axd monthly 0.5 2025-01-08 https://www.endaxd.org/blog daily 0.75 2025-02-27 https://www.endaxd.org/blog/blog-post-four-ps2gc monthly 0.5 2022-06-06 https://images.squarespace-cdn.com/content/v1/624b503b4e8eed088f164602/1649102925969-LK1JR8DRDLJJP8PDJQG0/download.jpeg Blog - Blog Post Four https://www.endaxd.org/blog/blog-post-three-zz8x4 monthly 0.5 2022-06-06 https://images.squarespace-cdn.com/content/v1/624b503b4e8eed088f164602/1649102925941-D4NYS3WIMLKV6GFV80YK/download+%281%29.jpeg Blog - Blog Post Three https://www.endaxd.org/blog/blog-post-two-pshs8 monthly 0.5 2022-06-06 https://images.squarespace-cdn.com/content/v1/624b503b4e8eed088f164602/1649102925952-S919OD2YYURNWJPT2DRH/image-asset.jpeg Blog - Blog Post Two https://www.endaxd.org/blog/blog-post-one-5d6dt monthly 0.5 2022-06-06 https://images.squarespace-cdn.com/content/v1/624b503b4e8eed088f164602/1649102925926-L22BA1UTTRCH581Y0QXH/justice-rising-ECHO-AND-EARL-3.jpg Blog - Blog Post One https://www.endaxd.org/community-stories daily 0.75 2026-02-27 https://www.endaxd.org/community-stories/mateomatias monthly 0.5 2026-02-27 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/78abe983-b1d6-497c-9f99-8b2a3925efbb/IMG_1497.jpeg Community Stories - Meet Matteo Mateo is a 8-year-old boy who, despite the challenges he faces due to Alexander disease, a leukodystrophy that affects the development of myelin in the central nervous system, demonstrates incredible strength and a spirit full of life every single day. His diagnosis came at just 8 months old, after experiencing his first seizure at 5 months, confirmed through genetic testing. Although Mateo cannot speak yet, he communicates all his emotions through his gaze. His eyes are a window to his world, filled with love, curiosity, and a unique connection with those around him. The way he expresses himself reminds us that words are not always necessary to convey feelings. https://www.endaxd.org/community-stories/nicholascasarino monthly 0.5 2026-02-26 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/82ba6a1a-b8fb-4ae4-a96f-daf2648abdfe/Rare+Disease+Week+-+Approved+-+Andrea+Casarino+%281%29.jpg Community Stories - Meet Nicholas Nicholas was diagnosed at age 2 and is now 17 years old. He has a tracheostomy and cannot walk or talk. He currently receives palliative care and requires two nurses to care for him. https://www.endaxd.org/community-stories/elikincaid monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/a34c7315-0280-4aa3-a5e4-ba303747a48b/Rare+Disease+Week+-Approved+-+Jillian+Kincaid.jpg Community Stories - Meet Eli - Our son Eli was born after a completely normal pregnancy and delivery. Like any new mom, I expected to watch him reach milestones in his own time, but as the months passed, I began noticing delays. By his nine month appointment, he was only just learning to sit independently. At the time, I did not realize we were at the beginning of a much different path than we had imagined. In July 2018, at just 18 months old, Eli experienced a cluster of seizures over one terrifying weekend. We were admitted to Seattle Children’s Hospital, and within three days he was diagnosed with Alexander Disease, a rare and progressive neurological disorder. We were told there was very little known about the disease and were sent home with the heartbreaking guidance to simply love our boy well. Doctors shared that he might live into his early teens, but the progression was unpredictable and often severe. https://www.endaxd.org/community-stories/brynnsmithers monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/60fc77d4-3219-4b19-b02f-678df4b48f01/Rare+Disease+Week+-+Approved+-+Taylor+Smithers.jpeg Community Stories - Meet Brynn - Brynn was born on May 4, 2024. She passed all of her newborn screenings and appeared to be a healthy baby at birth. The nurses told us they thought she would have strawberry blonde hair, but as the months went on, it turned into full red hair. Brynn was a happy baby. She started off hitting all of her milestones until about nine months old, when we began to notice subtle delays. She never took a liking to food or different textures other than formula. https://www.endaxd.org/community-stories/emorycurtis monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/e1183d30-1f94-4a6e-bd8d-24cb26de6969/Rare+Disease+Week+-+Approved+-+Stephanie+Curtis.jpeg Community Stories - Meet Emory - Emory was diagnosed with Alexander’s disease in April 2025. It took us a very long time to get answers. For years, she suffered from ongoing nausea, vomiting, and failure to thrive. We saw countless doctors, completed extensive testing, and still had no explanation or meaningful way to help her. Eventually, Emory became so sick and underweight that she had to be hospitalized. It was then that a provider recommended a brain MRI. We finally discovered the source of the problem. It was not in her GI tract. It was in her brain. That MRI led us to her diagnosis of Alexander’s disease. It also led us to the End AxD community and eventually to Dr. Waldman. https://www.endaxd.org/community-stories/willanylutgens monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/474336a8-936a-409b-907d-3564bf037dba/Rare+Disease+Week+-+Approved+-+Riekie+Lutgens.jpg Community Stories - Meet Willany - Willany was born without any signs of illness. He seemed like a perfectly healthy baby. He drank his bottle, ate fruit purées, and although he was a little slow to crawl, he could sit independently and pull himself up in the playpen. At one point, he lost his balance while sitting and did not try to catch himself. That gave me a strange feeling in my stomach. He also began vomiting more often and refused warm meals. The pediatrician reassured us, saying he just needed a little more time. When Willany was 1.5 years old, he caught a virus. Normally, that would not have been a problem. But this time was different. His fever rose quickly, and he developed epilepsy. He was admitted to the hospital with severe dystonia. At first, doctors could not find the cause. After being transferred to a university hospital, we were told a few days later that Willany had an abnormality in the white matter of his brain. Our world collapsed. https://www.endaxd.org/community-stories/asaflippo monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/fa7051ef-25b8-478a-b667-0a59d11e404e/Rare+Disease+Week+-+Approved+-+Lesley+Flippo.jpeg Community Stories - Meet Asa - Asa has been the sweetest, happiest little boy from the very start. Around six months old, we began noticing developmental delays. Soon after, Asa experienced seizures that led us down a long road of testing. Genetic testing ultimately confirmed a rare diagnosis, Alexander disease, which changed our lives in an instant. While this journey has brought uncertainty, it has also revealed incredible strength and hope. We are beyond grateful for Asa’s medical team and for the opportunity to participate in ongoing research, which gives us hope for his future and for other families walking this same path. https://www.endaxd.org/community-stories/robermartin monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/0608b1d6-957c-4245-9c6b-f4ac2fc1ebf8/1000279599.jpg Community Stories - Meet Rober - I never imagined the word leukodystrophy would appear in my life. The first time I heard it, my body trembled, a cold sweat ran through me, and I fell to the floor of a cold neurology office. I never imagined it would be spoken alongside the name of my son, Rober, a three year old boy full of light, contagious laughter, and endless energy. But suddenly, in the middle of what we thought was a normal routine, the ground opened beneath our feet. Our dreams vanished and our world collapsed. It all began in August, during vacation. A fall. A simple fall, the kind any child has fifty times a day. But this time it was different. From that moment on, everything changed. Rober did not react like he usually did. I noticed he was clumsier, more disconnected from his movements. He even stopped wanting to swing at the park. Something had changed, and I, his mother, knew it from the very first moment. https://www.endaxd.org/community-stories/caiomoreno monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/53d4e3dc-d743-4479-b3e6-f4859ce3e71d/D3C0B809-7124-4061-BBDF-EFAD673850FC.jpeg Community Stories - Meet Caio - Caio was diagnosed when he was two and a half years old. Today he is 31 years old. Before everything changed, Caio walked, talked, and played soccer. Then suddenly he developed a respiratory infection with fever and a generalized seizure. At that time, there were no specific neurogenetic tests available. Through magnetic resonance imaging with spectroscopy, doctors identified demyelination of the myelin. Gradually, Caio lost his motor and speech functions. Today he is quadriplegic, but stable. We care for him with dedication and love, overcoming the challenges of this devastating disease. With faith, we will win. https://www.endaxd.org/community-stories/valentino monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/c7a0dd21-05dd-4a6b-abc3-e415821ba200/Valentino.jpeg Community Stories - Meet Valentino Valentino, the Angel of our lives, is now 4 years old. We eagerly awaited him and he was the most anticipated child in the family until he finally arrived on January 11, 2020. He was born just like any other healthy child. During the first 6 months, there was nothing to worry or alert us. Then we noticed he wasn’t sitting or crawling like other children his age. We let it pass, thinking each child develops differently as his pediatrician had told us. As his first year passed, Valentino neither crawled nor walked. We were advised to start therapies to stimulate his motor skills. At 16 months, he started crawling, which was a great joy for us! However, the therapist noticed that Valentino’s head was slightly larger, something that no doctor had ever pointed out to us. https://www.endaxd.org/community-stories/isaiah monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/8c17ae5d-43fe-4786-929d-586b4422e5fa/Isaiah.jpeg Community Stories - Meet Isaiah Isaiah has been a great warrior since before he was born! He clung to life through a very risky pregnancy and was born at 32 weeks weighing just 3lbs 14 oz. Isaiah spent his first 40 days in the NICU. He always reached his developmental milestones a little later than normal, but his pediatrician assured us it was because of his premature birth. Isaiah is our third son so when he was about 6 months old, I could see things weren’t the same as with his older brothers. He was frequently vomiting and when he began to walk, he fell a lot hitting his head. In May 2020, after Isaiah was sick for a few days, he had a short seizure where he stood motionless looking at Asia above with a blank stare. I got scared and took him to the emergency room where they told us the seizure was completely normal https://www.endaxd.org/community-stories/lilas monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/20be0e93-0a84-4874-87fe-806970d9404e/Lilas%2Band%2BSilas.jpeg Community Stories - Meet Lilas https://www.endaxd.org/community-stories/eli monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/8054fa96-60b2-4f58-af49-83d029490dd8/Eli.jpg Community Stories - Meet Eli - Eli was our long awaited second baby. After 6 years of trying Eli came into our world. I had an easy breezy pregnancy. He was a great baby. His smile and big bright blue eyes were pure joy. Just like the other AxD patients, Eli started to not reach general milestones. By 9 months he was still not yet sitting unassisted, by a year not crawling. Our pediatrician gave us the same advice as the rest, that he was just later on the spectrum but was still meeting them in his own time. When Eli was 18 months old our whole world changed. He had a major seizure. I had never seen a seizure before and it rocked me. That first weekend he ended up having 3 more and we found ourselves https://www.endaxd.org/community-stories/kuno monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/bf8c286f-caf5-494b-a06e-9c1d039b73f4/kuno%2Bin%2Bball%2Bpit.png Community Stories - Meet Kuno - It was my first ever pregnancy and everything was going well and as expected with all antenatal exams. I was working as a Urologist at a busy tertiary hospital, Cambridge University Hospital, until at a very late stage of pregnancy. I was enjoying feeling Kuno's robust movements in my womb, anticipating a celebratory happy moment soon to come. This all changed at GW 36 - I am not sure if one would call it a 6th sense, gut feeling, or intuition, but I felt the urge to be scanned. Out of blue, there was this scary-looking severe hydrocephalus on the ultrasound, in which his CSF took up almost half of his brain! We quickly acted and switched to a C-Section. At this point, we were warned Kuno may not even survive through the delivery itself. Since the day I saw the ultrasound image of Kuno's brain, both my husband and I had cried day in and day out – because as physicians, it was all too clear what it meant. https://www.endaxd.org/community-stories/christopher monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/765b83e0-d80f-4b8b-b775-84e2358aa778/Christopher%2B3.jpg Community Stories - Meet Christopher - When Christopher was 5 months old, we realized that he wasn’t hitting the milestones that he should have been. He was such a calm baby, he hardly ever cried, but he wasn’t trying to sit up or wiggle much. The evening of May 27, 2005, we were working with him, propping him up against pillows to see if he could support himself. It was early, the very next morning, that he had his first seizure. Christopher was transported via ambulance to Children’s Hospital of Austin. The seizure was finally stopped after two hours, and Christopher was admitted to the hospital for testing. Over the next https://www.endaxd.org/community-stories/olympia monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/fcaeacbc-51a3-43cd-b7ce-0a1c0c3a4606/Olympia.jpg Community Stories - Meet Olympia - Olympia came to this world, together with her twin brother, Albert, as a surprise for us. Olympia was born perfect, no issues whatsoever during pregnancy or birth, she was rosy, fully awake, curiously looking around in the delivery room, not even a C section was necessary for her, she was full term. She latched right away, and she was breast feed until approximately 9 months of age. The only thing I noticed during her neonatal days was that she would choke on milk much more often than her brother, but we didn’t think much of it at that time, since she was eating very well and developing in line with standards. I started to notice something odd when she was about 5 months old. She was very easy to startle; at that age, her brother was curious about objects, and he would grab toys that were offered to him. With her it was not the same, https://www.endaxd.org/community-stories/hailey monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/7dd257d7-abd7-4dce-bbaa-ddd7d2f38c18/FB_IMG_1625754040958%2B%28003%29.jpg%2B%2BHailey.jpg Community Stories - Meet Hailey - Hailey was born perfectly healthy. She was such a beautiful baby, and was hitting all her infant milestones like rolling over and sitting up early. When she turned nine months old she suddenly changed. She began staring, had terrible constipation, wouldn't sleep more than 2 hours at a time, and was starting to fall over when she sat up . I was concerned and at her next pediatric appointment I told her doctor her symptoms. Her pediatrician thought I was just a nervous first time mom, and brushed it off. Things continued to get worse. Hailey was refusing to eat, couldn't suck from a bottle or sippy cup, and she https://www.endaxd.org/community-stories/aiden monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1ba91d93-8475-4216-b691-f96a5de86b1f/Aidan%2BJunior%2BProm%2B2021.jpg Community Stories - Meet Aiden - Aidan Drakeley was born in July 2004. Prior to his birth we were informed by his doctors that he suffered from unilateral renal agenesis. He would be born with a single kidney. It is not a particularly rare occurrence but his was complicated by a reflux issue which placed his kidney at risk from infection. Fortunately for Aidan we live in Bucks County PA just outside of Philadelphia and he received treatment at Children's Hospital of Philadelphia. (CHOP). Aidan had a normal childhood with only minor health issues. He was diagnosed with Kyphoscoliosis when he about 13. Again, he was seen at CHOP and received excellent care. On March 25, 2019, Aidan woke up not feeling a bit under the weather but he went to school. Two hours later we received a phone call from the school nurse that he had a high fever and was weak. We brought him home, tremoring and freezing cold. Thinking he just had a virus we tended to his fever, which went on for a couple of days before he began to experience double vision and was unable to walk or stand and couldn't feel below his waist. https://www.endaxd.org/community-stories/chayse monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/91995bbb-688e-41bd-842d-f04c0097e1f6/Chayse.jpg Community Stories - Meet Chayse - Chayse is the youngest of three boys and ironically the largest at birth however, it wasn’t long till he showed signs of being a pickier eater than his other two brothers had been. He would never really eat normal baby food and took his bottle for longer than I had ever let the other two. We didn’t think too much of it and chalked it up to just pickiness. Around 2 ½ years old he started to vomit almost every time he would drink a bottle or eat what little food he did eat. Doctors diagnosed this as acid reflux and treated that for a couple of years. From ages 4 to about 8 we noticed that Chayse’s pickiness got worse, he started having serious bathroom issues, his speech began to change, and he seemed to stop growing. https://www.endaxd.org/community-stories/megan monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/e12e95b7-2882-430e-a0bf-a0fc41948e0d/M%2Bat%2BEaster2017%2B%28004%29.jpeg Community Stories - Meet Megan - Our daughter Megan’s story is similar to the other families in the AxD community. She went through years and years of countless tests to gather an idea of what was happening in her tiny body. Her initial symptoms were slow to present and seemingly without connection with each other, so her story is long and varied. Unfortunately, the ending to our story is different than the other featured AxD warriors, although it’s no less impactful. Megan was 10 when we finally received her official diagnosis. My husband Keith and I were in blissful ignorance of the gravity of her diagnosis. Whether we unconsciously avoided the reality of her estimated life expectancy or we just didn’t fully absorb everything is still an unknown. https://www.endaxd.org/community-stories/daniel monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/80ee3239-f874-4dfb-99ce-2a455008cc68/Daniel%2Bhughes.jpg Community Stories - Meet Daniel - Daniel Hughes was born 19 April 2010 in Atlanta, GA. Throughout the pregnancy, Daniel was 2 weeks behind on the body size, and 2 weeks ahead on head size. At birth, he was underweight, couldn’t maintain his body temperature, and failed the car seat test. He was closely followed by Babies First until 6 months where he was referred to Babies Can’t Wait due to the lack of milestones reached. Daniel was not keeping up with his peers, so we were referred to Marcus Autism Center. He finally was seen around the age of 2 to find all blood work came back normal and didn’t appear to be on the autism spectrum so an MRI was ordered. Initially we were told he had mitochondrial disease. Before doing a muscle biopsy to research the type of mitochondrial, another MRI was ordered to see if there were any changes. It was then, early https://www.endaxd.org/community-stories/david monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/4bb831ad-104e-449a-816e-e85ee8b89178/David%2BStocki%2B1%2B%28003%29.jpg Community Stories - Meet David - David was born a healthy and happy baby. He wasn’t a great sleeper and spit up all the time, but babies do that, right? Some of his early milestones were also a little slow in happening but babies develop at their own pace, right? When he didn’t get up on all fours to crawl but rather chose to get around on his belly, I thought he was adorably quirky. He was a smiley and content baby. At 11 months he was diagnosed with food allergies to dairy, egg, and peanut which I thought this explained the excessive spit up. At his 18-month well-visit, when he wasn’t walking independently or saying many words, the pediatrician suggested early intervention. I thought the extra help would give him the confidence to improve. We started physical therapy for his low tone and speech therapy. David took his first independent steps just shy of his 2nd birthday. It was a great day! https://www.endaxd.org/community-stories/anna monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/53215661-d2af-49c1-834b-d72a54a8c632/Anna%2BW..jpg Community Stories - Meet Anna - written by Anna’s mom, Jennifer Our journey with Anna’s Alexander Disease diagnosis began over 21 years ago. During infancy Anna had some feeding difficulties, was slow to achieve gross motor milestones and her head size increased rapidly between 4 and 12 months while her weight started dropping off her curve. Her pediatrician recommended a brain CT scan at 15 months, then MRI at 18 months of age. The results revealed “an https://www.endaxd.org/community-stories/mila monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/61e6a248-53f7-4494-8f56-1102b8502def/Mila%2B1.jpg Community Stories - Meet Mila https://www.endaxd.org/community-stories/jordyn monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/b5bd9e9c-f1d5-44bb-8e84-d810d855ef49/Jordyn.jpg Community Stories - Meet Jordyn - In the spring of 2015, Jordyn Conn wasn’t walking yet. She had turned one, the previous December, but her parents were not overly concerned. In March, Jordyn began having tremors in her upper body which caused her to lose her balance when she crawled sometimes hitting her face on the floor. She also lost the ability to turn pages in her board books. After a normal EEG, the Conn’s were referred to a neurologist who performed an MRI. The results revealed that Jordyn likely had a Leukodystrophy, based on the pattern of the white matter in her brain. A month after the Conn’s received the Leukodystrophy diagnosis, genetic testing confirmed Jordyn had Alexander Disease. Jordyn’s mom, Amber, immediately sought out support groups online. She started a Facebook page to share Jordyn’s journey and build her “prayer tribe”. https://www.endaxd.org/community-stories/meris monthly 0.5 2025-02-27 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/7f94b3a1-ae79-42cb-96ca-a199f14f924f/IMG_9659%2B%281%29.jpg Community Stories - Meet Meris - At 9 months old, Meris White was gagging and retching when her parents attempted to feed her pureed baby foods. Still, at her 9 month doctor visit, pediatricians didn't seem concerned. Meris' parents, Qwynn and Brandon White, weren't convinced that this was a typical delay, so they continued to press for answers. While many first time parents are dismissed as being overly cautious, the White's decided not to ignore their instincts and reached out to the Tennessee Early Intervention System (TEIS) on their own to have Meris evaluated. Through TEIS, the White family learned that not only was Meris delayed in feeding, she was also delayed in gross motor skills. They were able to enroll Meris in several therapy services through TEIS, which eventually lead to referrals to a GI specialist and a neurologist. originally suspected Choreroathetoid Cerebral Palsy, so they ordered an MRI. https://www.endaxd.org/community-stories/elise monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1734114541426-3BJRIYOR57KGCWH6PPLU/Elise%2BBonsky.jpeg Community Stories - Meet Elise - Born in September 2011, Elise Bonsky is a bright, vibrant 8 year old. Early in life, she suffered from a few developmental delays and seizures, but while the Bonsky family made sure she didn't outgrow her dosage of Keppra and had annual MRI's, they had little cause to suspect she might have a devastating underlying condition. Then, in November of 2014, the Bonsky family received a phone call from her local neurologist that changed everything. The tone of voice said it all: Something in Elise's MRI had changed and they needed to get to the hospital as quickly as possible. They didn't know what it was, but they knew it was serious. Then, in the office, the doctor gave them the news: he suspected Alexander Disease. He had written it on a tiny slip of paper, in all caps. https://www.endaxd.org/community-stories/cameron monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/a68256d9-1adf-47aa-a146-b605f0016644/Cameron%2BPhoto%2B-%2BArchery.jpg Community Stories - Meet Cameron - “Life has thrown some curve balls our way, but through it all I have been blessed and cannot complain. I’m not saying it has all been easy as there have been peaks and many valleys of worry year to year not knowing what the future holds. But you can’t focus on those, you just live today. I have been given a gift of an incredible son that I am so blessed to still have and my prayer is to enjoy each day the Lord continues to provide.” -Charla Bruns https://www.endaxd.org/community-stories/grayson monthly 0.5 2024-12-16 https://images.squarespace-cdn.com/content/v1/674dfee77df4ac0cb346193e/1734112822573-CACY6X2K898ZLCJCYJM0/Grayson%2BEnd%2BAxD.jpg Community Stories - Meet Grayson - “Grayson lights up a room. I don’t know that there’s anybody who wakes up happier than Grayson. He’s just the happiest little guy and always full of joy. And he’s working all day. He doesn’t necessarily know it, but he’s working and being evaluated and measured all day long. 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