When our son was diagnosed with an intractable epilepsy, I spent hours researching about various possible conditions and looking for resources. Dealing with the sadness AND late-night research was extremely daunting. I want to alleviate that stress for parents. Here you will find a list of various conditions and a plethora of resources directly relating to that condition. My prayer is that this website makes your journey just a bit more bearable.
ADHD is one of the most common neurodevelopmental disorders of childhood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors, or be overly active.*
Asthma is a disease that affects your lungs. It causes repeated episodes of wheezing, breathlessness, chest tightness, and nighttime or early morning coughing.*
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain.*
A bone marrow transplant is a procedure that infuses healthy blood-forming stem cells into your body to replace bone marrow that's not producing enough healthy blood cells. A bone marrow transplant is also called a stem cell transplant.* (MayoClinic)
Celiac disease is a chronic digestive and immune disorder that damages the small intestine. The disease can cause long-lasting digestive problems and keep your body from getting all the nutrients it needs.**
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood.*
When a child does not outgrow the fears and worries that are typical in young children, or when there are so many fears and worries that they interfere with school, home, or play activities, the child may be diagnosed with an anxiety disorder.*
Occasionally being sad or feeling hopeless is a part of every child’s life. When children feel persistent sadness and hopelessness, they may be diagnosed with depression.*
Obesity is a complex disease that occurs when an individual’s weight is higher than what is considered healthy for his or her height. Obesity affects children as well as adults.*
Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these birth defects commonly are called “orofacial clefts”.
Congenital heart defects (CHDs) are conditions that are present at birth and can affect the structure of a baby’s heart and the way it works.
Cystic fibrosis (CF) is a genetic disorder that causes problems with breathing and digestion.*
Diabetes is a chronic (long-lasting) disease that affects how your body turns food into energy.
Trisomy 21, also known as Down syndrome, is a condition characterized by a distinctive pattern of minor and major anomalies associated with excess chromosome 21 material.
Developmental dyspraxia is a disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks.
Failure to thrive (FTT) is a descriptive term for insufficient growth, usually identified in infancy.
Hearing loss can affect a child’s ability to develop communication, language, and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential.
Hemophilia is an inherited blood disorder that can lead to chronic health problems such as joint disease over time.
Hydrocephalus is a neurological disorder caused by an abnormal buildup of cerebrospinal fluid in the ventricles (cavities) deep within the brain. This excess fluid causes the ventricles to widen, putting harmful pressure on the brain's tissues.
Leukemia is a cancer of the blood cells and bone marrow (the soft, sponge-like tissue in the center of most bones that makes blood cells).
Lupus is a chronic autoimmune disease in which the immune system sees the body’s healthy cells as foreign invaders and attacks them, causing inflammation and harm to the affected organs.
Migraine is the most frequent primary headache disorder in children and adolescents.*
Fibromyalgia (fi·bro·my·al·gi·a) is a condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress.
Multiple Sclerosis (MS), a chronic inflammatory autoimmune disease of the central nervous system (CNS), is most commonly diagnosed in (young) adults, but can also affect children.
Excessive daytime sleepiness (including episodes of irresistible sleepiness) combined with sudden muscle weakness are the hallmark signs of narcolepsy.
Neurofibromatosis is not a single medical disorder. It refers to three different conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and all other parts of the body.
A developing baby goes through important growth throughout pregnancy—including in the final months and weeks. Premature (also known as preterm) birth is when a baby is born too early, before 37 weeks of pregnancy have been completed.
Retinoblastoma is a rare eye cancer that forms in the retina (the light-sensitive tissue at the back of the eye). It’s most common in children younger than age 5 — but in rare cases, it can develop in older children or adults.**
Scoliosis is a disease that causes the spine to curve. It can result in an abnormal s-shaped or c-shaped curve. Anyone can get scoliosis. But it’s most common in children age 11 and older.**
Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD).
Spina bifida can happen anywhere along the spine if the neural tube does not close all the way.
is an inherited blood disorder that causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body.
Tourette syndrome is a condition that affects the brain and nerves, causing people to make repeated movements and sounds, also known as motor and vocal tics, that they cannot control.
What Parents Say
I often feel like I'm on an island in this journey, but We Are Survivors - KIDS Support Group has helped me see that I'm not alone. The meetings give me a place to share what's really going on and have people truly understand and provide encouragement. Honestly, it is an answered prayer.