Shane Simpson, Minister of Social Development and Poverty Reduction, has released the following statement in recognition of World Cerebral Palsy Day:
“Today is World Cerebral Palsy Day. This is an opportunity to celebrate, raise awareness and take action to ensure that people living with cerebral palsy have the same rights, access and opportunity as everyone in our communities.
“Cerebral palsy is a physical disability that affects a person’s movement, posture and speech. It is the most common motor disability amongst children. There are more than 10,000 British Columbians living with cerebral palsy who deserve to live with dignity in a world without barriers.
“This year, anyone with cerebral palsy and related conditions, as well as their friends, families and communities, are encouraged to get active. The Move as One event is promoting the benefits of sport, physical activity and mental health on the quality of life for those living with cerebral palsy. People across B.C. and around the world are sharing their contributions on social media using the hashtags #CPMoveAsOne and #WorldCPDay.
“As part of the global GoGreen4CP campaign, we’re lighting up the Parliament Buildings in Victoria in green today in support and recognition of children and adults who have cerebral palsy.
“We recently launched public consultations to inform the development of legislation, standards and policies to better support people with disabilities so they can live with dignity and participate in their communities. I encourage everyone to attend a community session or provide their feedback online: https://www.engage.gov.bc.ca/accessibility
“Every person living with cerebral palsy has the right, and should have every opportunity, to have as full and complete a life as they would like.”
Six-year-old Mattias Thompson loves to play hockey, but he was born with a rare hip disease that is keeping him off the ice. However, thanks to early intervention and surgery, the Grade 1 student from Chilliwack may just have a chance to get back in the game one day.
Mattias is a major Pittsburgh Penguins fan, and loves sports, says his mother Nikki Thompson. While it may be years before he can play hockey, the family is hopeful he will be able to play baseball next year.
Dr. Kishore Mulpuri, the orthopedic surgeon at B.C. Children’s Hospital who performed Mattias’s surgery, said it’s too soon to comment on his long-term prognosis, but said he has a much better chance of a full recovery because of early treatment.
“We caught it very early and that will help him. If he was older he would be more at risk for arthritis. So we want to get it to as normal as we can,” said Mulpuri.
Mulpuri was recently awarded a $450,000 research grant from the federal government’s Canadian Institutes of Health Research program for his team’s project, I’m a HIPpy, which he started three years ago to help children here and in other countries receive early screening and treatment for hip dysplasia and other hip conditions.
Mattias was diagnosed with Legg-Calvé-Perthes disease, which restricts blood supply to the femur, eventually killing the bone. He spent weeks at B.C. Children’s in April having a full hip reconstruction. Preparation for that surgery included five days where for 23 hours a day he had to be in traction with his legs splayed apart.
In the summer of 2018, Mattias starting limping severely and so his family took him to the local hospital in Chilliwack. At first doctors told the family it was a virus that would go away in six weeks. After his limp got worse, they went back to the hospital and a paediatrician took X-rays and then diagnosed him with juvenile arthritis. They went to B.C. Children’s for an MRI and on that night the radiologist called the family to say he doesn’t have arthritis but instead had Perthes disease.
He really wants to be able to run and play with his friends, but otherwise he is doing so much better, said Thompson.
“Early detection can really change the outcome for these kids,” she said.
She said the family’s steel business recently held its annual softball fundraiser and raised more than $32,000 for I’m a HIPpy to helps kids like her son benefit from early detection. On Oct. 5, the annual I’m a HIPpy fundraiser gala will take place at the Vancouver Convention Centre.
Mulpuri says if hip dysplasia goes unchecked, many adults develop arthritis and will need hip replacements.
“People don’t realize that every single child around the world should be screened to see if their joints are loose,” he said, adding that roughly 40-50 people per 1,000 people are born with loose hip joints. “If it is picked up early on then they could have a normal life with an early brace treatment. So the key message is we need to get to them early.”
Overall in B.C. the mean age is three months for detection, he said, but in other countries like India and China the age is two to three years, so that means the kids at nine to 12 will be having 15 to 17 surgeries.
“Their entire childhood goes to just surgery after surgery. It affects their mobility and takes their childhood away,” he said.
Mulpuri and his team created the International Hip Dysplasia Registry, which is the largest research and patient registry in the world. The registry is funded by HIPpy, with the goal that this research will help children worldwide.
While early screening is the best method to prevent the burden of hip dysplasia, Mulpuri said there are still other risk factors that need to be addressed like baby swaddling, for example.
“A lot of people wrap the babies tight for comfort, but that puts them at risk of hip dysplasia,” he said,
Other conditions that put kids at risk include being in a breech condition or having unequal leg lengths.
“As soon as we figure out they have a dysplasia or dislocation based on the severity we then treat with a brace treatment, which has over 90 per cent success rate if you treat early,” he said.
Mulpuri advises watching children for signs of hip dysplasia including if they’re having knee pain or walking with one foot turned out. He also says parents shouldn’t worry about getting a hip X-ray or asking their doctor if their baby was screened. At birth, all newborns in B.C. are tested for hip dysplasia, but there is currently no standardized testing and in some countries, little testing at all.
When not properly diagnosed, children can go on to have numerous surgeries and physical limitations that will impact them for life, causing much suffering and significant costs to medical systems, said Mulpuri.
Mulpuri said thanks to the CIHR grant, the support of B.C. Children’s Hospital, donors and volunteers, they are expanding their network, building data and statistics into the database “at an extremely fast pace.”
The financial impact of missed hip-dysplasia diagnosis to Canada and U.S. health-care systems is about $625 million a year, according to Regina Wilken, executive director of I’m a HIPpy.
Mulpuri works with doctors in Canada, the U.S., Europe, China and India sharing the database knowledge and assisting with hip-dysplasia patient surgeries.
He says the ultimate goal is to help all children improve their quality of life.
The federal government is asking for input on how tomakeCanada’s travel network the most accessible in the world for all passengers, including people with physical and mental disabilities.
It haspublished a new set of regulations for the public to view and consult on in the Canada Gazette, the federal government’s official newsletter. There, people can leave comments for the Canadian Transportation Agency, who said they will update the proposed changes based on public feedback.
“(It’s) an ambitious vision, but we believe that in a country who values include equality and inclusion, we should aspire to nothing less,” said Scott Streiner, the chair and CEO of the Canadian Transportation Agency.
The proposed changes would help centralize the CTA’s existing rules, six of which are voluntary, into a legally-binding set of transportation regulations.
How to better communicate with disabled travellers
How to train transportation workers to help travellers with disabilities
How to make carriers and terminals accessible for all travellers
How to provide accessible services
How to make border and security screening accessible
Proposed changes range from automated self-service desks, training for staff to help those with sight and hearing impairments and assisting people with disabilities getting in and out of terminals.
The changes would apply to large airlines – an airline that carries more than one million travellers annually – VIA Rail and Amtrak operators, ferries weighing at least 1,000 gross tonnes, as well as Greyhound and Mega Bus operators.
Airports that served more than 200,000 passengers over the past two years, any transportation terminals used by the aforementioned companies, and Canadian ports used by cruise ships would also fall under the new regulations.
The announcement was made at Vancouver International Airport, which received the Rick Hansen Foundation’s gold certification for accessibility last December.
If approved, the regulations would go into effect one year after they are published. The consultation period is open until April 8th, and feedback can be emailed to [email protected]
The CTA hopes to have the final regulations published by this summer.
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