Supporting Canadian Children with Cerebral Palsy.
In 2014, Handi-Care Intl. started a new initiative to help children with disabilities and their families in Canada, by providing added support towards their rehabilitation needs. When a family has a child with a disability, there are many expenses that are not covered by provincial health plans, government support programs or private health insurance. In particular HCI has identified Selective Dorsal Rhizotomy (SDR) as a treatment option that is not available in most provinces in Canada.
There are 50,000 Canadians with cerebral palsy (CP). One in every 500 babies is affected and one in three of premature babies can be impacted by CP. CP is a non-degenerative neurological condition that impacts how the brain communicates. There are several types of CP, with the most common being spastic CP. There is no cure for spastic CP, but there are various treatments that help to reduce muscle spasticity. One of these treatments is Selective Dorsal Rhizotomy (SDR), which can help eliminate spasticity and reduce the need for invasive, painful orthopedic surgeries later in life. For some children it can help improve their mobility, sometimes even allowing them to walk with a walker or independently. It can also help children transition from position to position and can make some of the activities of daily living (toileting, dressing, carrying, etc.) easier.
A less invasive technique for SDR surgery was developed by Dr. T.S. Park at St. Louis Children’s Hospital, St.Louis, USA. The majority of families undertaking the surgery at St. Louis Children’s Hospital have not been successful in getting government funding in Canada for the surgery. In fact, it has been such a challenge that Global News has produced a series chronicling the challenges (See In the News tab.
The cost of the surgery is approximately $50,000 U.S. (though can vary from child to child, depending on the extent of surgery required). The cost of post surgery physiotherapy is significant (an average of $150/hour is common, with therapy being required 5 times/week for 1-2 years). The cost for families to fund this surgery and necessary rehabilitation can be close to $200,000, taking into account the cost for surgery, physiotherapy, therapy equipment, other expenses that are incurred during a one month stay in St. Louis, and for many families, the cost of losing one income as a parent is required to take the child to post-surgical appointments/physiotherapy following the surgery.
Many families are funding the surgery by holding personal fundraising campaigns to pay for the procedure. Currently, families often use crowdfunding websites such as gofundme.com or kickstarter.com to help their fundraising campaigns; however, these websites do not offer donors tax receipts and actually profit from donations by taking a high percentage of dollars raised during campaigns. This discourages donors from being as generous as they could be if they go through a registered charitable organization.
As a registered charity with a mandate to focus on rehabilitation services for children, Handi-Care Intl is filling this void by supporting families with their fundraising efforts.
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Post Inception Updates
As of June. 2019, HCI has helped with 15 surgeries and post SDR rehab. Currently raising funds for 4 who are getting the surgeries in 2019 and 2020. Another 4 applications are in process.
HCI is accepting applications from parents of children requiring SDR surgery. Applicants can send in the request as follows:
CRITERIA FOR FUNDING SDR SURGERY RECIPIENTS
Action undertaken by HCI:
Supporting Canadian Children with Cerebral Palsy
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