SDR PROJECT

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.

Click here to Learn More.

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:

  1. Write a letter of request asking for Handi-Care’s help in raising funds for the SDR surgery of your child. (A sample letter is provided for your guidance)
  2. The letter should contain a brief description of the child’s diagnosis and history, leading to the recommendation for the surgery.
  3. Fill the Application form (download below) and sign
  4. Download the “Agreement” from link below, and both parents / guardians must sign.
  5. E-mail us at: info@handicareintl.org

 

Download Application

Download Agreement

CRITERIA FOR FUNDING SDR SURGERY RECIPIENTS

  1. Funding will be need based on medical grounds. Supporting documents from doctors and hospital performing surgery.
  2. Case presentation to the HCI board with photos and information about the child and surgery.
  3. Each applicant is asked to write a letter of request along with requirements under #1 and #2.
  4. Each applicant should submit a budget with breakdown of expenses.
  5. The parents / family members of the child will basically run the fundraising campaigns. HCI will receive funds and issue tax receipts to donors for any donation of $20 or more.
  6. HCI will cap the donation receipt by a parent at $10,000 per year (A couple would be eligible for $20,000 per year).
  7. There are no limits to corporate donations.
  8. HCI will retain 3% of such donations to cover admin costs and the balance will be spent on the treatment of selected children.
  9. HCI will wire transfer the funds directly to the hospital, upon mutual agreement with the hospital.
  10. The hospital will provide bank and account information for each child selected for surgery to facilitate money transfer.
  11. HCI will need confirmation from the hospital that funds have been received.
  12. Confirmation and further recommendation for therapy for the child by the doctor will be provided to HCI by the parents.
  13. Any left over funds can be utilized for post surgery therapy. HCI will be invoiced directly by the service provider.
  14. Parents agree to periodically send in videos of the child to be used by HCI for information and promotional purposes.

Action undertaken by HCI:

  1. Funds will be disbursed directly to the hospital and not to individuals.
  2. Issue tax receipts by email for donations of $20 and more. Please allow up to 2 weeks to receive tax receipt. If the donor needs to know if the money has been received by us, he/she can contact us directly by email.
  3. Corporate donations can be invoiced / receipted by HCI.
  4. Funds raised for SDR will be kept in a separate “SDR project” fund for each child.
Supporting Canadian Children with Cerebral Palsy

Read Bentley’s Story:

http://globalnews.ca/news/2097606/ontario-family-raising-100000-for-surgery-so-3-year-old-boy-can-walk/

 

      


Other quick links:

http://globalnews.ca/news/2103077/outpouring-of-support-after-global-news-story-about-boy-who-needs-surgery/

http://globalnews.ca/news/2170390/families-fighting-for-childrens-surgery-rejected-by-ohip/

http://globalnews.ca/news/2242425/child-poised-for-surgery-in-u-s-despite-being-denied-ohip-funding/

http://globalnews.ca/news/2321967/family-fights-back-against-ohips-refusal-to-pay-for-sons-surgery-in-the-u-s/

http://globalnews.ca/news/2324480/family-says-cerebral-palsy-surgery-not-available-in-ontario-is-success-in-u-s/

To ensure children make the most possible gains post-surgery, intense, one-on-one physiotherapy is required. Because the public system in Ontario is limited in what it can provide to families, families often augment their public services significantly and pay for it out of their own pocket as many private insurance/employee benefits programs have a low cap on the amount of physiotherapy they will fund.

Contact Us :

Handi-Care Intl.,
38, Larwood Blvd.,
Toronto, ON, CANADA M1M 2M5.
E-mail : info@handicareintl.org

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