Welcome to Dorje's Haven!

Dorje’s Haven is a non-profit organization whose mission is to help children with neurological conditions experiencing motor and speech impairments by establishing a therapy center where these children can receive a variety of conventional and alternative treatments at no cost to them. 

There is great need to assist children with neurological conditions and their families. 

• About 5,000 children are born with Down syndrome each year in the US (Association for Children with Down Syndrome). Down Syndrome Incidence Rate: approx 1 in 800 or 0.12% or 340,000 people in USA. Incidence extrapolations for USA for Down Syndrome: 340,000 per year, 28,333 per month, 6,538 per week, 931 per day, 38 per hour.
  Source: http://www.wrongdiagnosis.com/d/down_syndrome/stats.htm

• Cerebral Palsy Incidence Rate: approx 1 in 34,000 or 8,000 people in USA. Incidence extrapolations for USA for Cerebral Palsy: 8,000 per year, 666 per month, 153 per week, 21 per day.
  Source: http://wrongdiagnosis.com/c/cerebral_palsy/stats.htm

• Incidence (annual) of Epilepsy: 181,000 people diagnosed each year (CDC). Incidence Rate: approx 1 in 1,502 or 0.07% or 181,000 people in USA.
  Source: http://www.wrongdiagnosis.com/e/epilepsy/stats.htm

• According to the Centers for Disease Control and Prevention (2001), an estimated 200,000 children are hospitalized each year with brain trauma and 30,000 sustain permanent disabilities.
  Source: http://www.biausa.org/Iowa/whatis.htm
  
  

• Developmental disorders are public and social problems of large proportions.  2.5 to 5% live births occur with congenital anomalies.  Based on stats provided by the US government for live births in 2005, this means ther are at least 103,000 infants born every year with congenital anomailies.  Up to 50% of patients with serious malformations show involvement of the central nervous system.
  Source: http://kobiljak.msu.edu/CAI/Pathology/Deve_F/Deve_1.html

• The number of children with limitation of activity caused by speech problem  per 1,000 population is 12.1 for children under 5 years, 20.4 for children from 5-11 years, and 5.6 for children between 12-17 years.  The number of children with limitation of activity caused by mental retardation or other development problem per 1,000 population is 8.4 for children under 5 years, 10.5 for children from 5-11 years, and 11.0 for children between 12-17 years.

Source:  http://www.cdc.gov/nchs/data/hus/hus07.pdf#fig14

The children from the statistics above suffer from varying levels of disabilities, as mild as having difficulty controlling one side of their body, and as severe as being non-mobile and non-verbal.    They require a tremendous amount of both medical and therapeutic intervention in order to minimize the results of their disabilities and maximize their potential.   

The families of these children find themselves in a challenging, overwhelming situation.  They have to attend to the extensive needs of the child, work to earn the funds to support the child, which exceeds that of a typical child as they require additional equipment, therapies, and medical interventions, set up and coordinate services and therapies, drive to and attend a myriad of therapies every week, navigate the maze of public and private services and go to multitudes of doctor’s appointments.  Often, they face a complex dilemma – the choice between reducing their monetary capacity by having one parent staying home and taking care of the child in order to provide them the therapies and services they need, or working for the income to pay for services and equipment while neglecting the needs of the child. 

This dilemma is further augmented by the extreme costs of taking care of a child with special needs.  Although there are state and federal programs available to some of these families based on income, demand, and other factors, they are often limited in what they offer and it can be extremely difficult and time-consuming to obtain these services.   Some of the costs include paying for special needs equipment, augmentative communication devices, adaptive toys, physical, occupational, and speech therapy, medical expenses, and alternative therapies such as hyperbaric oxygen therapy, intensive model of therapy, and others.  The families are faced with an impossible decision:  face poverty and extreme financial hardship by using all of their resources to help the child, or minimize the equipment and help offered to the child in order to prevent extreme financial stress.  Consider that some families may have already made the decision for one parent to stay at home with the child in order to meet their day to day, medical, and therapeutic needs, so already their income may be compromised.

It is rare that a child can receive all therapeutic interventions from just one source.   Often the child has to be driven great distances to receive different kinds of necessary treatment.  For example, they may receive physical and occupational therapy in one clinic, aquatic therapy at a pool, hippo-therapy at a ranch, speech therapy and vision therapy at yet another location.   It is rare to live somewhere where all of these different types of therapies are located within close range, which means either the child can only go every few weeks, or the family spends a lot of time driving from place to place.  This is if they can even afford to receive the adequate treatments.  Often insurance will only cover a minimal amount of therapies, like 1 hour of physical therapy per week, which is not appropriate for children with severe global developmental delays.

In most cases, the lack of adequate intervention and equipment leads to the need for costly and painful surgeries.  For example, if a child cannot afford a standing device and does not receive adequate stretching and physical therapy, his hips may become dislocated due to spasticity, which requires a painful invasive corrective surgery.  Studies have shown that hip dislocation and corrective surgery can be prevented with proper intervention.  This is just one example highlighting the importance of providing proper assistance and intervention to children with neurologic conditions.

The vision for Dorje’s Haven arose from this vast need.