A note from us with a picture of a smiling person in a life jacket on a boat on a river, with a rainbow in the sky behind them.
A webpage titled 'About Us' from Love Never Sinks organization with a photo of a smiling boy in a red shirt and cap in a blue stroller in the upper right corner. The page describes efforts to support families affected by Lesch-Nyhan Disease.
A presentation slide with the title 'As you begin your journey, these are our suggested first steps' on the left and a blue box on the right titled 'Early Intervention is Vital', listing steps such as identifying a physician, nephrologist, neurologist, early intervention program, and applying for Medicaid waiver. The slide has a LoveNeverSinks.org logo at the bottom right.
Infographic about Lesch Nyhan Disease illustrating gene mutations, inheritance patterns, symptoms, and statistics including the prevalence of the disorder, original symptom 'orange sand' in the diaper, and details about the genetic mutation and movement disorder.
Informational infographic titled "What is Lesch Nyhan Disease?" with three columns detailing classic Lesch-Nyhan disease, Lesch-Nyhan variants, and their clinical symptoms. Text is highlighted in red and orange with a DNA helix illustration. Logo for LoveNeverSinks.org at the bottom right.
An informational poster titled "HGPRT Enzyme Activity" explaining the enzyme's role and activity levels, with a small diagram of the enzyme activity cycle at the top right corner and the website LoveNeverSinks.Org at the bottom right.
A woman with dark hair, wearing a black and white floral dress, smiling and leaning over a young girl sitting in a wheelchair. The girl is also smiling, wearing a white top and blue pants, with her feet extended outward. They are outdoors near a playground with green plants in the background.
Text explaining Lesch Nyhan Disease on a white background with a small LoveNeverSinks.Org logo in the bottom right corner.
An informational slide discussing movement disorder, focusing on dystonia, hypotonia, and strength, with a blue section on the right containing definitions and a logo at the bottom.
A slide with the title "Signs/Symptoms" mentioning Lesch Nyhan and Lesch Nyhan Variant (HND) dystonia. It discusses movement disorder caused by hypotonia, with a section on "Definitions" describing Opisthotonos, a severe spasm causing the back muscles to arch and bend backward, often linked to neurological conditions. The slide includes the website LoveNeverSinks.org.
Text slide about medical specialists, listing neurologist, nephrologist, geneticist, and physiologist, with a logo at the bottom right for LoveNeverSinks.org.
A medication list with three sections on a slide or poster: Uric Acid Control with Allopurinol (Febuxostat), Urine PH Balance with Sodium Citrate, Benzodiazepines. A warning about neuroleptic drugs. Contact LoveNeverSinks.org at the bottom right.
Illustration of a zebra wearing orange sunglasses, with a LENS logo below it featuring a cross and a heart, surrounded by a circular phrase supporting Leschin-Nyan and raising awareness for Leschin.

If your child has recently been diagnosed with Lesch-Nyhan, it's important to understand the signs and symptoms associated with the condition. This information can help you better understand the individual’s needs and advocate for appropriate care.

Children and adults with Lesch-Nyhan may experience a variety of symptoms, including self-injurious behavior, neurological problems, motor difficulties, kidney stones, and gout. However, it's important to remember that each individual's experience with the condition will be unique.

If you have any questions or concerns about your child's or adult’s symptoms, please talk to your doctor. They can help you understand the individual’s specific needs and provide appropriate care.

A white slide with black text that says, 'Ignore the Behaviors, not the individual,' and a small logo in the bottom right corner that says, 'LoveNeverSinks.Org' with a heart and a sinking ship graphic.
A colorful infographic titled "Categories of Self-Injurious Behaviors and Management Strategies" by Gary Eddey, MD, ScM(HYG), Kelly Henry, MSW. It includes sections on self-injury as a hallmark of Lesch Nyhan disease, recognition of self-injurious behaviors, physical self-injury using self, and self-injury from equipment. Each section is highlighted in different colors with bulleted descriptions and examples.
Infographic on recognizing self-injury behaviors, including teeth biting, aggression, verbal distraction, sabotage, vomiting, and spitting, with descriptions and examples of each.
A colorful infographic with sections titled 'Lying = Exaggeration' in yellow, 'Over or Under Exaggeration to Avoid' in green, a paragraph in blue about recognizing self-injurious behavior and implementing devices, and a pink section about redirecting behavior. It emphasizes the importance of not ignoring behaviors and explains methods for addressing self-injury in a medical or caregiving context.
Presentation slide titled 'Steps to Implement Selective Ignoring with Redirection' with a logo in the bottom right corner reading 'LoveNeverSinks.Org'.
A text excerpt from LoveNeverSinks.org about selective ignoring with redirection, emphasizing the importance of behavior and actions over individual punishment. The text is highlighted in a turquoise box, and there is a quotes box with a quote about ignoring behaviors. The source logo is at the bottom right corner.
A colorful infographic titled 'Management Strategies Classic Lesch Nyhan' by Gary Eddey MD and Kelly Henry MSW. The infographic discusses strategies for managing behavior, including highlighting the importance of immediate implementation of protective devices, the need for universal use of redirection, and the importance of understanding the behavioral context. It features quotes, bullet points, and a small logo of Love Never Sinks at the bottom right.
An infographic providing guidelines on managing problematic behaviors in children, emphasizing the importance of acting 'business as usual,' redirection, and understanding appropriate responses to behaviors such as licking or biting. It includes quotes, examples, and explanations about recognizing and addressing certain behaviors effectively.
Quote in black text on an orange speech bubble, outlined in black, with white quotation marks at the top left and bottom right. The quote discusses the importance of practice and self-discipline when managing selective ignoring, and how consistent behavior leads to a better personality and reduced anxiety. The speech bubble is on a white background, and there's a small logo in the bottom right corner that includes a blue and red shield and the text LoveNeverSinks.Org.
A young boy in a wheelchair smiling and resting his head on a pillow, with a quote about dental care in a yellow speech bubble above him.
Text titled 'Protective Devices (Classic LN)' on a white background.
A colorful infographic titled 'Use of Protective Devices or Safeguarding Equipment' with information about protective devices for individuals with Classic LND and Lesch Nyhan syndrome, including safety guidelines, standards of care, and authorities involved.
Quote in a yellow speech bubble with black outline and quotation marks, about joint commission regulations and protective devices, attributed to Lesch Nyhan, with a logo and URL for LoveNeverSinks.org at the bottom right.
A colorful chart with safety and protective equipment guidelines for patient care, including items for bed, bathroom, meal prep, gastrostomy tube, wheelchair, and stroller, with specific device and accessory details.
Slide with the word 'Therapies' centered and a small LoveNeverSinks.org logo at the bottom right corner.
A presentation slide titled 'Therapies' with text about beginning therapies early, including conventional and alternative options. A blue sidebar lists therapies: Physical Therapy, Occupational Therapy, Speech and Language Pathologist, and Selective Ignoring and Redirection for Behavior. At the bottom right, there is a logo for LoveNeverSinks.org.
Child with Lesch-Nyhan disease participating in physical therapy with arm splints or braces, standing on a balance scale, smiling, in a therapy setting.
A young boy with a big smile, sitting on a playground swing with a yellow safety frame, outdoors during daytime.
A young boy sitting in a specialized seat, holding a sign that says "Hunter."
An informational graphic about durable medical equipment, listing categories such as wheelchair, adaptive equipment, sleep system, and orthopedic braces, with a logo and website contact at the bottom.
Child in a wheelchair with arm, leg, and chest support devices, outdoors in a park.
Information page about wheelchairs with an image of a black and white wheelchair and a logo at the bottom right corner.
A medical stander device with blue cushioned support structures designed to hold patients in upright, prone, or supine positions, shown in upright, reclined, and prone orientations.
Information slide about a gait trainer for children with Lesch Nyhan Disease, showing a picture of a medical gait aid.
Image of three specialized child bathing chairs in pink, blue, and yellow with harnesses, displayed on a product information page for bath/shower chairs.
A presentation slide titled 'Foot & Arm Bracing' with two images of children in braces. The left image shows a child in a wheelchair with ankle braces, and the right image shows a child with an arm immobilizer being fitted with a brace.
Document listing commonly recommended products for children, including Billy Footwear, EazyHold, and Elbow Immobilizers, with descriptions of their uses.
A list of recommended products, including Firefly Products, Special Tomato, Freedom Concepts Inc., and Medi-kid, with descriptions of their purpose and features.
A list of durable medical equipment (DME) vendors with website links, including FireFly Friends, Rifton Adaptive Equipment, R82, Leckey, Adaptive Mall, and Tadpole Adaptive.
Slide titled 'Lesch Nyhan Research' with logos and links to Lesch-Nyhan.org, NIH, and ClinicalTrials.gov, and a small LoveNeverSinks.org logo at the bottom right.
Roadmap illustration titled 'Gene Therapy currently under development @ UPenn', depicting stages of gene therapy research from basic research to clinical trials and approval, with a colorful cartoon-style design.
Title slide for a research presentation on CRISPR and LND research, featuring logos for the National Human Genome Research Institute and LoveNeverSinks.org.
List of six helpful videos with colored icons and links, organized under the heading 'Helpful Videos,' with a Love Never Sinks logo in the bottom right corner.
A glossary page with definitions for medical terms such as Phenotype, Self-Injurious Behavior, Hypotonia, Dystonia, and Ospistotonos.
A world map of Lesch-Nyhan with red pins indicating global contacts for Amory Fuerza Lesch Nyhan in Mexico, LND Famiglie in Italy, and Lesch Nyhan Action in France, along with contact links and a logo of LoveNeverSinks.org.
Text on a webpage titled 'Medicaid Wavers' explaining Medicaid waivers for children with complex needs, with a link labeled 'Kids' Waivers | By State'.
A smiling young boy with curly hair sitting in a gray stroller, wearing a white shirt, blue shorts, and a dark scarf, outside on a sunny day.
Logo for Love Never Sinks with a black anchor, red heart, and the phrase 'Love Never Sinks' beneath the acronym LNS, surrounded by a blue border.