About CCFI -English БОЛЕЗНЬ  КРОНА / КОЛИТ معلومات عن الجمعية الاسرائيلية لمرضى الكرون والتهاب الامعاء التقرحي :

2013 Children’s Empowerment Year

The Goal

CCFI is planning in 2013 to focus on activities that empower children.

After receiving wonderful feedback from the 2012 activities, we are expanding and focusing the year’s events and activities on ways to empower children.

 

The challenges of having IBD in childhood

IBD is a life changing illness

There are approximately 3000 children inflicted with IBD in Israel. Approximately 250 new cases are diagnosed annually. IBD can be diagnosed at any age and can range from mild to severe.

It is scary when your child starts having recurring diarrhea that won’t go away, bouts of severe abdominal pain, bloody stools, cramps, loss of appetite and fatigue.

Most children respond to treatment with various degrees of success. However, in 10% of the cases surgery is necessary. For UC patients the colon and rectum are surgically removed in three separate operations.

The Physical Implications:

IBD causes an “abdominal mess”: Urgent and frequent “need to go”, abdominal sounds, gastrointestinal bleeding, foul-smelling stools, pain with passing stool, cramps, irritation, itching and pain of the anus.

Children with IBD may also suffer from involuntary passing of stools and gasses. Loss of appetite, weight loss and delayed growth.

Treatment will often involve hospitalization, colonoscopy, intravenous treatments, painful injections and having to go very frequently to the toilet. There is also change in the child’s looks either due to Cortisone treatments (“moon face”), loss of appetite and weight loss and impaired physical growth. Being severely ill shows.

The Emotional Implications

When you are a child it is hard to explain to your friends why you are feeling so sick. Dealing with symptoms that are so closely associated with feces and having to spend so much time at the toilet are extremely embarrassing.

Younger children fear cruel responses; adolescents feel too vulnerable to share the fragility of their own body with others. For both children and adolescents, the inability to control their bowl movement interferes with their most basic sense of self and independence.

Because IBD is a capricious condition, even in times of remission, children may have a lingering fear of future flare-ups. Teenage girls may develop anxiety around issues of fertility and labor. Weakness and Fatigue is typical to IBD, leaving the child physically and emotionally drained.

As a result, having IBD in childhood causes an emotional rollercoaster with symptoms such as: depression, withdrawal, anger, guilt, shame, anxiety and loneliness. This results in a reclusive behavior, loss of confidence and social standing.

Children with IBD are absent for long periods from school (one of our board members has a son who missed out on three consecutive years). Even when the disease is in remission, the child may be reluctant to go to school due to lack of privacy in the school’s toilet or fear of “accidents.

 How can we help and provide support?

We believe that experiential and adventure therapy techniques, which promote bonding, self confidence and well-being provide significant benefits. Fun-filled experiences defined by laughter, adventure and acceptance are “the best medicine”.

As a patient foundation we see it as our duty to promote healing any way we can, thus helping children get away from their day-to-day challenges. Children and families inflicted by disease forget the joys of simply having fun!

We also work with parents and children on alleviating the negative social stigma associated with IBD via our hotline, website, lectures, meetings, webinars and support groups.

The following activities are planned for 2013:

  1. Healing Summer Experience: We are fortunate to have the collaboration of a unique healing summer experience at Jordan River Camp (part of the Hole in the Wall Gang Camp –adventure camps for seriously ill children founded by actor Paul Newman)
  2. Expanding Hot-Line Service Spectrum to Include Children: having a psychologist as an advisor to our hot-line service would significantly expand our ability to respond to questions regarding psychological and emotional issues (within the appropriate boundaries),
  3. Annual Adventure-Empowerment Trip – our last Jeep trip to the Judean Desert was a huge success.

 1.    Jordan River Camp – Summer Healing Experience —  Camp Background

Jordan River Village: located near the Kineret, this is the only place in the Middle East where seriously ill children with life-threatening conditions can have and share fun-filled, memorable experiences.

The camp is part of an international movement called “Hole in the Wall Gang” founded by actor Paul Newman.

The Chairman of the Board for Jordan River Village is Mr. Chaim Topol.

The Village includes an unobtrusive state-of-the-art, 24-hour medical supervision facility, comfortable cabins, special swimming pool, dining hall complex, performing arts theater, sports & recreation center, arts & crafts building and much, much more.

Children between the ages of 9 and 18, may come once a year for a week’s vacation. No parents are allowed. It is an opportunity for the children to break free and “raise hell…” and for parents to rest.

Following Paul Newman’s wishes, no child or family will ever pay to attend the Jordan River Village which is open year-round.

Request for Support

Our experience with JRV has been a phenomenal one. It is a thrilling experience for the children of all ages.

We work to provide this opportunity to our children because JVC provides extraordinary experiences unattainable for them anywhere else.

Cost

A week at the camp costs $2000 per child. CCFI is requested by JRV to contribute 4,200 shekels (approximately $1000) for each child participating at the camp.

We need to raise $145.000 in order to provide one week of summer healing fun to 120 children.

We are asking for your kind support of this project.

2.    Expanding our Hot-Line Service to include children

Many of the questions we receive through our hot-line are related to children. Having professionally-guided responses to psychological and emotional related questions will significantly improve the benefit for our hot line callers.

To achieve that we need psychological services on a 2 hour a weekly basis.

We also need professional advice when planning events and activities for children.

Cost

The annual cost of hiring a psychologist on a 2 hour retainer basis is: $6,000

We are asking for your kind support of this project.

We will be able to immediately apply this gift to benefit children who are ill themselves or children who suffer due to the illness of a parent or a sibling.

3.    Adventure Trip

A gift of $10,000 will allow us to organize another adventure fun day which is geared at empowering children. We do so by exposing them to “cool adventures” experiences. Parents are invited to stay at a gathering place where they have informal meetings with doctors and experts.

This framework was hugely successful this year and we would like to repeat it.

We are asking for your kind support of this project.

These kinds of events have an added value as they encourage the participants to become paying members.