Dated: March 10, 2020

As an organization working with a medically vulnerable population, enCourage Kids’ primary responsibility is to our community – our children, our families, our hospital partners, and you, our supporters.

With that in mind, we have made the difficult but prudent choice to postpone our 35^th Anniversary Gala scheduled for Wednesday, March 11th.

We know this will cause inconvenience to many of the hundreds of supporters – longtime and new – who have generously contributed and planned to attend. We will miss this opportunity to spend time with all of our committed guests, but we hope you will continue to consider your support to be a worthy contribution toward children and families facing daily health related difficulties.

COVID-19 has already begun to make enCourage Kids’ work with our hospital partners challenging, as healthcare facilities have started to restrict access. And, the postponement of our major fundraising event will have immediate and long-term impacts on the ways in which enCourage Kids supports the children and families we serve both in and out of the hospital.

We are developing plans to replace the funds we would have raised at our Gala, which had a $1.5 million goal. We will need your help to continue our work, especially now. Your additional contributions, small or large, will help our children and families find joy, hope, resilience, and healing.

We are monitoring this quickly changing situation and look forward to rescheduling in the months ahead. In the meantime, we hope you will stay tuned, remain committed, and keep safe.

The month of March is dedicated to celebrating and cheering on Child Life Specialists around the country.

Child Life Specialist: noun

A person who is educated and clinically trained in the developmental impact of illness and injury. Their role helps improve patient and family care, satisfaction, and overall experience.¹

In both healthcare and community settings, Child Life Specialists are equipped to assist infants, children, youth, and families with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss, and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain.¹

We are incredibly honored and proud to work alongside Child Life to continue to improve the hospital experience for pediatric patients and their families. Many times, we get asked: “What does Child Life mean to you?”. For us, this is an easy answer. What we have learned over the years from working in pediatric facilities, that many things come back to Child Life. Their job is not easy, but it makes a profound difference in the lives of millions of children and their families around the country.

Without Child Life, a pediatric patient’s experience in a hospital is exponentially scarier than it should be. There are sharp needles, terrifying sounds, unfamiliar words, and unknown people. Even the simplest of procedures or visits can cause anxiety in a child. Child Life is always there to comfort, answer questions, and engage children in ways that help them cope with hospitalization.

For the 3 million children hospitalized every year in the United States, Child Life Specialists understand the unique challenges that accompany a hospital visit. With enCourage Kids’ support and funding, together, we are making hospitals a better place to get better. Join us this month as we celebrate and share the stories of how Child Life makes a difference.

1- https://www.childlife.org/the-child-life-profession

“She has a fire and a spirit inside her that doesn’t let her quit.”

February 7^th through February 14^th is Congenital Heart Defect Awareness Week. A congenital heart defect is a problem with the structure of the heart that is present at birth. Congenital heart defects are the most common type of birth defect and they can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. One of our incredible enCourage kids, Dorian, was born with a congenital heart defect. We asked her parents if we could share her story during this week, and they were so excited to be able to tell the world how strong, brave, and kind their daughter Dorian is. Below, you can read more about her story from her dad Joe’s perspective.

Dorian was born with a very severe case of Tetralogy of Fallot with Pulmonary Atresia. We didn’t know how bad it was until we got to Boston Children’s Hospital where her two amazing doctors, Dr. Emile Bacha & Dr. Audrey Marshall, saved her life. It wasn’t an easy road for her or us. In the process of saving her, Dorian also suffered a stroke. She had her first set of open-heart surgeries at 10 weeks old and her third one at a little over a year old. In between, she had many cardiology appointments, plus echocardiograms every 3 months. She was also seeing otolaryngology, neurology, gastroenterology, and she was also seeing a doctor for a fracture she incurred in her spine while in Boston. So for us running around became the norm. As time went by she slowly got better and better. In the beginning, travel was virtually impossible because we needed oxygen to fly, but now we don’t. We would never have thought about going to California let alone a cruise, but we are excited to say that we’re planning one now.

Between the pageants, Girl Scouts, and ice hockey, there’s nothing she can’t do. She’s come so far because of the amazing doctors at both Boston Children’s and Montefiore Children’s. She has a fire and a spirit inside her that doesn’t let her quit, and it doesn’t know when to give in. She’ll keep going until she does it or falls down from trying to do it.

Dorian has been a part of enCourage Kids since she was about two years old. Since she joined, she has been on 5 or more camping trips, enCourage Kids day at Six Flags, enCourage Kids day at Citi Field, and the annual trip to FunFuzion.  One of her fondest moments was riding the Zamboni and being the stick girl for the Rangers. She also attended various other events through the Family Outings program like movies, hockey games, basketball games, concerts, Garden of Dreams talent show, and the list goes on and on. One special moment that happened this past year was Dorian being able to throw out the first pitch for the enCourage Kids Night at Citi Field. That was a once in a lifetime opportunity for her, and she thought it was so cool. I’d have to say I think this organization not only has done amazing things for Dorian but has also let her volunteer so she can give back to this amazing organization!!

We are grateful to have Dorian and her family as a part of the enCourage Kids community. It is such an honor for us to get to watch our enCourage kids grow up to be incredible people, living life to the fullest. You can see a few more pictures of Dorian through the years in the slider below. Thanks for reading!

The month of October is dedicated to shining a light on many disabilities and medical conditions. We hope this helps you understand and advocate for your friends and family members who have or know someone who has a disability.

Down Syndrome Awareness Month

Down Syndrome Awareness Month is a chance to spread awareness, advocacy, and inclusion throughout the community. During October, we celebrate individuals with Down syndrome and make people aware of their abilities and accomplishments. We get the chance to celebrate their abilities, rather than their disability.

Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. According to the Centers for Disease Control and Prevention, approximately one in 700 babies in the United States is born with Down syndrome, making it the most common chromosomal condition.

Here are a few tips on the preferred language when speaking about or with a person with Down syndrome:

• People with Down syndrome should always be referred to as people first.
• Instead of “a Down syndrome child,” it should be “a child with Down syndrome”.
• Down syndrome is a condition or a syndrome, not a disease- you cannot catch it.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted” by it.

World Cerebral Palsy Day

World Cerebral Palsy Day is a movement of people with Cerebral Palsy and their families, and the organizations that support them, in more than 75 countries. The vision of this day is to ensure that children and adults with Cerebral Palsy (CP) have the same rights, access, and opportunities as anyone else in our society.

There are 17 million people across the world living with CP. Another 350 million people are closely connected to a child or adult with CP. It is the most common physical disability in childhood. CP is a permanent disability that affects movement. Its impact can range from weakness in one hand to almost a complete lack of voluntary movement.

CP is a complex disability. 1 in 4 children with CP cannot talk. 1 in 4 cannot walk. 1 in 2 has an intellectual disability. 1 in 4 has epilepsy. CP is a lifelong disability and there is no cure. Cerebral Palsy can also lead to other muscular issues, such as hip dysplasia or scoliosis. Fortunately, these can be treated with the help of an orthopedic physician to make living with Cerebral Palsy easier. You can learn more about this at Medical City Children’s Orthopedics & Spine Specialists.

World Mental Health Day- Thursday, October 10th

World Mental Health Day celebrates awareness for the global community in an empathetic way, with a unifying voice, helping those feel hopeful by empowering them to take action and to create lasting change. This year for World Mental Health Day, the main theme is “suicide prevention.” Somebody somewhere in the world dies of suicide every forty seconds. Ninety percent of these individuals have a clinically diagnosable mental illness. One-third of suicides occur in young people, and is the leading cause of death between ages 15 to 29, and is the second most common cause of death in women between 15 and 19 years old.

Although 1 in 5 children has a diagnosable mental health problem, nearly two-thirds of them get little to no help. Without treatment, children with mental health issues are at increased risk of school failure, contact with the criminal justice system, dependence on social services, and even suicide. Without treatment, these problems could continue into adulthood, causing them further problems down the line. Unfortunately, many adults find it hard to seek out a treatment plan that works, unless you decide to look at these Medterra reviews to learn how CBD oil could potentially provide a lifeline. And for many people it does. But diagnosing the problem and finding the relevant help as soon as possible will be in everyone’s best interest, as it could help to prevent suicide.

Studies show that suicide attempts among young people may be based on long-standing problems triggered by a specific event. Suicidal adolescents may view a temporary situation as a permanent condition. Feelings of anger and resentment combined with exaggerated guilt can lead to impulsive, self-destructive acts.

Four out of five teens who attempt suicide have given clear warnings. Pay attention to these warning signs:

• Suicide threats, direct and indirect
• Obsession with death
• Poems, essays, and drawings that refer to death
• Giving away belongings
• A dramatic change in personality or appearance
• Irrational, bizarre behavior
• An overwhelming sense of guilt, shame or rejection
• Changed eating or sleeping patterns
• Severe drop in school performance

National Physical Therapy Month

National Physical Therapy Month is an opportunity to raise awareness of the benefits of physical therapy. Physical therapy is a popular form of treatment that is very effective at treating disease, injury, or disability. It is a very good alternative to traditional surgery or drugs, as it relies on methods such as massage, heat treatment, and exercise.

Physical therapists can be found in many different settings- including outpatient clinics, private clinics, hospitals, schools, and the emergency room- and there are also many different types of physical therapy. Some examples include orthopedic, acute care, post-operative care, cardiovascular, pulmonary rehab, neurologic rehabilitation, and wound care. Although many people think physical therapists can only rehabilitate injuries, they actually work to prevent injuries as well by educating patients on safer movements and motions If helping and aiding patients that struggle with physical symptoms is something that inspires you, maybe search for some physical therapy jobs near me, these positions can offer massive flexibility considering the settings you’re able to find PT workers in.

Sudden Infant Death Syndrome (SIDS) Awareness Month

SIDS Awareness Month exists to provide parents and families with more information about how to reduce the risk of SIDS. According to the Centers for Disease Control and Prevention (CDC), approximately 3,500 infants died in the United States in 2014 from SIDS. SIDS is the sudden death of an infant less than 1-year old that cannot be explained after a thorough investigation that includes a complete autopsy, examination of the death scene, and a review of the medical history. This is the most commonly occurring unexplained death of infants.

Teaching points for prenatal or postpartum education on safe sleep include:

• Exclusive breastfeeding significantly reduces the risk of SIDS.
• Newborns and new parents sleep better when nearby.
• Always place infants on their back for any sleep.
• Do not allow any smoking in the home. Encourage and provide information to help women stop smoking during pregnancy.
• Swaddling has not been shown to reduce the risk of and may increase the risk of overheating and SIDS. Avoid swaddling during times of sleep.
• Do not use couches or chairs for nighttime feedings.
• Do not co-sleep if either parent smokes or is using alcohol or drugs which can alter responding to the baby.
• All surfaces on which the infant might be sleeping need to be safe. This includes cribs, cots, playpens, and the parental bed (if the mother falls asleep while feeding). A safe sleep surface includes:
  • Firm mattress
  • Well-fitting sheet
  • No blankets or pillows
  • No bumper pads
  • Use only equipment designated and approved for infant sleep
  • No surface that can entrap an infant
  • No toys or pets sharing the same sleep surface
  • Avoid swaddling or clothing that can cause overheating

Spina Bifida Awareness Month

Spina Bifida Awareness Month is a time to celebrate the hundreds of thousands of people living with Spina Bifida. Spina bifida means “split spine.” It happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine. Spina bifida is often referred to as the “snowflake condition” as no two people are affected in the same way.

Spina bifida is the most common permanently disabling birth defect compatible with life. Over 1,600 babies are born with spina bifida every year in the United States. Spina bifida occurs in the first 28 days of pregnancy, often before a woman even knows she’s pregnant. Children with spina bifida have medical expenditures 13 times greater than those without spina bifida. Along with many of the other disabilities overviewed in this page, people with spina bifida often tend to be unable to work throughout their lives, meaning their income will more than likely be acquired through Social Security disability benefits. If you’d like to learn more about disability benefits head on over to a webpage such as Crest SSD or other similar SSD advocacy services.

National ADHD Awareness Month

Attention-Deficit/Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder affecting both children and adults. It is described as a persistent or ongoing pattern of inattention and/or hyperactivity-impulsivity that gets in the way of daily life or typical development. Individuals with ADHD may also have difficulties with maintaining attention, executive function (or the brain’s ability to begin an activity, organize itself, and manage tasks), and working memory.

There are three presentations of ADHD: inattentive, hyperactive-impulsive, and combined inattentive & hyperactive-impulsive.

In 2011, the Centers for Disease Control and Prevention reported that the percentage of children in the United States who have ever been diagnosed with ADHD is now 9.5%. Boys are diagnosed two to three times as often as girls.

Currently, available treatments focus on reducing the symptoms of ADHD and improving functioning. Treatments include medication, various types of psychotherapy, behavioral interventions, education or training, and educational support. Usually, a person with ADHD receives a combination of treatments.

Rett Syndrome Awareness Month

The goal of Rett Syndrome Awareness Month is to bring about awareness for Rett syndrome, while also striving to find a treatment and a cure. It is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls but can be rarely seen in boys. It is often misdiagnosed as autism, cerebral palsy, or a non-specific developmental delay. Rett syndrome can occur in all racial and ethnic groups and is not a degenerative disorder. Throughout a person’s life, Rett syndrome can cause problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. It is the leading genetic cause of severe impairment of girls- most cannot speak, walk, or use their hands. Despite their physical disabilities, girls with Rett syndrome are believed to be functioning mentally at a much higher level than previously thought. Rett syndrome is a potentially reversible disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

The month of May is always filled with beautiful flowers blooming and much welcome warmer temperatures, but it is also full of many awareness days and ways to educate yourself on events going on in the medical community. Here at enCourage Kids, we want to make sure to celebrate and bring awareness to things that are in line with our mission and the pediatric patients we serve around the country. In this blog, you will be able to learn and share about many different awareness days in May, seeing how each disease or disability affects our community.

World Lyme Day (May 1^st) // National Lyme Disease Awareness Month

Caused by tick bites alone, Lyme disease infects 300,000 Americans every year. Of those 300,000 infected, 75,000 are children. Some symptoms include fever, headache, fatigue, and a unique skin rash. More often than not, a person infected with Lyme disease has a difficult time finding the cause of these symptoms. An average patient sees five doctors over nearly two years before being properly diagnosed. However, if an individual is particularly concerned that they have lyme disease, they could always consider purchasing a lyme panel to see if that eases their mind slightly whilst they continue with their doctors appointments to get a conclusive opinion. Most cases of Lyme can be treated with antibiotics, about 40% of patients will end up with long-term health problems.

When you are outside, be aware of places where ticks are more present. These include grassy, bushy, or wooded areas. There are many EPA (Environmental Protection Agency) approved insect repellents that will help protect you from ticks when you are outdoors. Always check your clothing, gear, and body for ticks, as well as check your pets.

National Cornelia de Lange Syndrome Awareness Day (May 11^th)

National Cornelia de Lange Syndrome (CdLS) Awareness Day exists to help individuals with CdLS receive an earlier diagnosis and to reduce the isolation families experience.

CdLS is a rare genetic disorder that affects intellectual and physical development. Children with CdLS usually have a low birth weight, are smaller in size and height, and have a smaller head circumference (microcephaly). CdLS occurs in approximately 1 of every 10,000 live births.

Some characteristics of CdLS include:

• Developmental delays
  • They can range from mild to severe.
  • Learning disabilities and severe language delays are often present.
• Gastrointestinal Involvement
  • It is estimated that 85% of people with CdLS experience some type of gastroesophageal reflux.
  • The pain that can accompany gastroesophageal reflux disease (GERD) can make eating unpleasant and lead to a variety of behavioral problems.
• Behavioral Issues
  • People with CdLS may exhibit a number of behavioral problems such as self-injury, compulsive repetition, and/or autistic-like behaviors.

People with CdLs face common medical issues which can often result in hospital stays. These include: gastroesophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss.

Mental Health Month

The awareness raised by Mental Health Month plays an important role in fighting stigma, providing support, educating the public, and advocating for politics that support people with mental illness and their families.

Did you know that 1 in 5 adults in the United States experiences a mental health condition in a given year? That is 46.6 million people per year. Over half of all lifetime mental health conditions begin by age 14, and 75% by age 24.

1 in 5 children ages 13-18 has, or will have a serious mental illness. The average delay between the onset of symptoms and beginning intervention is 8-10 years. After noticing the symptoms, there are four things parents can do:

1. Talk with your pediatrician
2. Get a referral to a mental health specialist
3. Work with the school
4. Connect with other families

Mood disorders, including major depression, dysthymic disorder, and bipolar disorder, are the third most common cause of hospitalization in the United States for both youth and adults aged 18-44.

The most important thing that Mental Health Month aims to accomplish is to break the stigma of mental health, giving people who have mental health conditions more access to interventions and medical help. Mental health conditions go beyond your normal emotional ups and downs, they are medical conditions that cause changes in how we think and feel as well as in our mood. They are never a result of personal weakness, lack of character, or poor upbringing- a common misconception in society today. With proper treatment, people can realize their full potential and live a productive and healthy lifestyle. Treatment can include counseling, medication, outpatient or inpatient treatment facilities. You can even access Christian facilities if you so wish, such as Honey Lake, the number one Christian mental health program in the USA.

Celiac Disease Awareness Month

When you meet someone who is on a gluten-free diet, he or she may have celiac disease, a serious autoimmune disease. If someone with celiac disease eats gluten, an autoimmune response is triggered in the small intestine. Over time, this reaction can damage the small intestine’s lining and prevent absorption of important nutrients.

Did you know that 1 in 133 people in the United States has celiac disease? That is approximately 3 million people. And an astounding 83% of those with celiac are undiagnosed. When left undiagnosed and untreated, individuals with celiac are at risk for other serious health conditions, such as osteoporosis, anemia, thyroid disease, and even certain cancers. In the United States, it takes an average of 6-10 years to be correctly diagnosed with celiac disease. Early diagnosis is incredibly important for lowering a person’s chance of developing other autoimmune conditions.

Right now, the only treatment for celiac disease is a strict gluten-free diet.

Cystic Fibrosis Awareness Month

Cystic fibrosis (CF) is a genetic disease that causes persistent lung infections and limits the ability to breathe over time. More than 30,000 people in the United States currently live with cystic fibrosis and there are approximately 1,000 new cases of cystic fibrosis diagnosed every year. CF is diagnosed by age 2 in more than 75% of people.

CF is complex and the types and severity of symptoms can differ widely from person to person. Many different factors, such as age of diagnosis, can affect an individual’s health and the course of the disease. On average, CF patients take about 30 pills a day and spend much of their lives in and out of the hospital.

Due to research and incredible medical advancements, the life expectancy for a person living with CF has increased from 6 years to 48.8 years since 1960.

National Asthma & Allergy Awareness Month

Did you know that more than 60 million Americans are living with asthma and allergies? Let’s learn a little bit more about each and how they affect the day-to-day lives of Americans around the country:

Asthma:

Asthma is a lung disease that makes it harder to move air in and out of your lungs. Asthma currently affects more than 26 million Americans in the US, 6 million of those being children. It is the leading chronic disease in kids and is the top reason for missed school days. In 2013, children missed about 13.8 million days of school due to asthma.

Asthma rates and deaths are highly connected to poverty, air pollution, indoor allergens, poor healthcare, and not enough patient education. It causes over 2 million emergency room visits, 14 million doctor visits, 500,000 hospitalizations, and more than 3,600 deaths in a year. The annual cost of asthma in the United States is $82 billion, which includes doctor and hospital visits, medical costs, and trips to the emergency room.

Allergies:

A food allergy is a medical condition in which exposure to food triggers a harmful immune response. The symptoms of an allergic reaction can range from mild (itchy mouth, a few hives) to severe (throat tightening, difficulty breathing). The eight major food allergies include milk, egg, peanut, tree nuts, wheat, soy, fish and crustacean shellfish.

It is estimated that 32 million Americans have food allergies, including 5.6 million children under age 18. That’s 1 in 13 children or roughly two in every classroom. Additionally, almost 40% of children with a food allergy are allergic to more than one food. Caring for children with food allergies costs families in the United States nearly $25 billion annually.

Every three minutes, a food allergy reaction sends someone to the emergency room, and unfortunately, childhood hospitalizations for food allergies have tripled between the late 1990s and the mid-2000s. Because of this, if your child has a food allergy, it is important to check that your health insurance covers you for allergic reactions. The last thing you want after a trip to the emergency room is a hefty bill.

National Physical Fitness & Sports Month

National Physical Fitness & Sports Month exists to promote a healthy lifestyle and show children and adults how much exercise they should be getting each and every day. Children should be active for no less than 60 minutes of exercise a day, whereas adults are encouraged to engage in 30 minutes or more of physical activity. The benefits of exercise for children and adolescents include improved muscular fitness, bone health, and heart health. For adults, exercise can lower the risk of heart disease, type 2 diabetes, and some types of cancer.

Did you know that only 1 in 3 children are physically active every day? 74% of children ages 5-10 do not get enough exercise and 12.5 million kids aged 2-18 are considered obese. Unfortunately, many of those children will experience fat shaming, which can seriously impact their mental health. Taking part in this healthy lifestyle month will show children how to be more active, which can encourage them to let off steam and take care of their mental health. Sport plays a huge role in someone’s mental health and this month can show them ways to keep active wherever they are, whether it’s at home, school or elsewhere. 96% of elementary schools to offer no physical education classes, making it even harder for children to reach that 60 minutes of exercise every day, hence the reason for this month being so important.

Resources:

https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers

https://www.cdc.gov/ticks/avoid/on_people.html

https://www.cdlsusa.org/raise-awareness/

https://www.cdlsusa.org/characteristics-of-cdls/

https://www.mdmag.com/medical-news/five-facts-about-huntingtons-disease

https://rarediseases.info.nih.gov/diseases/10510/juvenile-huntington-disease

https://www.cdc.gov/physicalactivity/basics/index.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fphysicalactivity%2Fbasics%2Fchildren%2Findex.htm

https://healthfinder.gov/nho/maytoolkit.aspx

https://www.cdc.gov/healthyschools/physicalactivity/facts.htm

https://infographiclist.com/2012/11/09/is-your-child-getting-enough-exercise-infographic/?utm_medium=twitter&utm_source=twitterfeed

https://www.aafa.org/asthma-and-allergy-awareness-month/

https://www.aafa.org/social-media-tools/

https://community.aafa.org/set/shareable-awareness-images

https://www.cff.org/News/News-Archive/2015/May-Is-National-Cystic-Fibrosis-Awareness-Month/

https://www.cff.org/Get-Involved/

https://celiac.org/about-celiac-disease/what-is-celiac-disease/

https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/

https://www.beyondceliac.org/60forceliac/Fast-Facts-about-Celiac-Disease-Infographic/1448/

http://www.childrenslymenetwork.org/children-lyme/children-lyme-disease-infographic/

https://worldlymeday.wixsite.com/worldlymeday

https://worldlymeday.wixsite.com/worldlymeday/lyme-basics

https://www.foodallergy.org/life-with-food-allergies/food-allergy-101/facts-and-statistics