More Summer Camps for Children with Ehlers-Danlos Syndrome

the-hole-in-the-wall-gang-camp

The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall.  Children with Ehler’s Danlos and their families will be eligible for this session.  In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that these families are eligible for.  Our application is available on our web site at www.holeinthewallgang.org.  For each of these sessions we can accommodate about 25 families.  We give priority to families in the Northeast.  We are working with NORD (National Organization of Rare Diseases www.raredisease.org) to recruit families for the weekend.

 

 

Our application lists the following as the general requirements to attend camp:

  1. Diagnosis of cancer, a serious blood disease, acquired or hereditary immune disorder, or metabolic/mitochondrial disease. In certain cases we can accept children with other rare diseases.  Please contact us with any questions.
  2. Be age 7 to 15.
  3. Live in the Northeast. Campers from other areas are included when possible.
  4. Be unable to attend a non-medical camp.

I think one of the key points here is the inability to attend a non-medical camp.  We have a large medical staff of nurses and physicians on site when the campers are here.  We support children with medical diagnoses who:

  • Have daily or weekly direct nursing care needs (multiple medications, infusions, g-tubes, central line care, etc.)
  • Do well some or most of the time, but have a high risk of getting sick (needing medical attention and/or treatment)
  • Need extra attention from staff (counselors and/or medical) to prevent them from getting sick/keep them well (extra rest, significant dietary needs, 1:1 attention or observation, etc).

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More Camp Opportunities


Camp Boggy Creek, Eutis , Florida (north of Orlando)

They have had children with EDS before included in the JRA Sessions

Flying Horse Farm, Mt. Gilead, Ohio

Yes to our kids they are best suited in Rheumo & GI sessions July 9-14, Heart, June 18-23

The Painted Turtle- Santa Monica, Calif

Have had before best in Skeletal Dysplasia and Special Diagnosis weeks

Round up River Ranch- Gypsum, Colorado

Have had kids before, best in the Cardio weeks, they are open and looking to accommodate more kids in other weeks

Victory Junction- Randleman, NC near Greensboro

Yes they have kids, best weeks are Neuro/genetics and Rheumo/gastro

 

Camp Korey- Carnation, Washington (newest camp)

Yes they want to include more children

 

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  • Carolyn Swift

    My daughter had acute liver failure and transplant. She has since developed postural orthostatic tachycardia syndrome (POTS) . She suffers from chronic dizziness and fatigue. She is at increased risk of illness from her immunosuppressant medications. She is unable to attend any camps. She is 14 and we live in MA. Would she qualify for this camp? Carolyn Swift

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