The Irrepressible Braun Brothers

All parents want their children to grow up happy, healthy and self-sufficient. For families who have a child with a physical disability, these goals are much more difficult to reach, especially in these economic times. Debbie Braun from Wingham, Ontario is a single parent of four who knows this better than anyone. Her two sons, born two years apart, have a rare disease that has serious health consequences and a shortened life expectancy. 

Brothers Lucas, age 11 and Zane, age nine were both born with Morquio Syndrome, a degenerative bone disorder that results in a kind of dwarfism. Weighing thirty pounds each, Lucas and Zane are as big as they ever will be. They do not have developmental delays, but don’t have the hand strength to put on their own socks in the morning. Both boys require electric scooters to get around.

In 2002, Debbie Braun faced the possibility of moving her family from their home. The brothers have endured so many corrective surgeries on their legs and backs, that they could not access the main part of their home. Easter Seals Ontario was there to help with the financial assistance needed to add a stair lift to make their home accessible.

“My kids just want to get around. You just can’t say ‘thank-you’ enough to Easter Seals for helping to give my kids a normal life—well, as normal as it can be," says Debbie Braun. 

Easter Seals Ontario assists families of kids with physical disabilities with the purchase of costly mobility equipment such as walkers, wheelchairs, porch lifts and ramps, as well as communication devices and bathing equipment. By providing financial assistance, Easter Seals performs an essential service to families who might not otherwise have the resources to obtain this equipment. And, in these challenging times the need is greater than ever.

“These are especially challenging times for families. A family with a child with a severe disability incurs huge expenses associated with their care that can cost up to $40,000 a year," says Carol Lloyd, President and CEO of Easter Seals Ontario. We wish to thank supporters and tell people about the importance of their donations in helping children with physical disabilities live safely in their own homes with dignity, and a greater level of independence."

Easter Seals Ontario also owns and operates two fully accessible residential camp properties and is recognized as an industry leader in providing specialized recreation programs for kids with physical disabilities. Lucas and Zane have attended Easter Seals Camp Woodeden, near London Ontario and their mom reports that they ”can’t stop talking about it." At camp they escape isolation and meet other kids who they can relate to, something that is not available in their small community. 

The brothers will appear on the annual Easter Seals Telethon on Sunday, April 5th on CBC and are featured in the Easter Seals direct mail campaign, one of Easter Seals’ largest fundraising initiatives. For more information on Easter Seals programs in Ontario, please visit http://www.easterseals.org/.

Introducing Easter Seals 2009 Provincial Ambassadors

Easter Seals is very pleased to introduce new ambassadors for Alberta, Manitoba, Ontario and Prince Edward Island.

Zak Madell, Easter Seals 2009 Youth Ambassador for Southern Alberta

Fifteen-year old Zak Madell is a remarkable young man who believes that life is 10% of what happens to you and 90% of how you react to it. Attitude is everything.

Easter Seals Alberta is proud to announce Zak as the 2009 Easter Seals Youth Ambassador for Southern Alberta.

Zak is a grade nine student from Okotoks, AB. At the age of ten, Zak developed a bacterial infection which spread throughout his system causing septic shock. His body was able to protect his brain and heart, but much of his tissue did not survive and, as a result, he required amputation of his legs and fingers. Today you can find Zak getting around in a custom-made wheelchair.

Zak attended Easter Seals Camp Horizon in 2008. His favorite activities at camp included the giant swing and the zip line. Zak also enjoyed playing power hockey with friends and camp counsellors. “When I’m at camp, I get to do things I normally would not get a chance to do. I get to meet new friends and try new things,” said Zak.

Zak has a passion for community involvement. His wish is to see more accessible sporting events, entertainment and recreation facilities for people with disabilities. His dream is to be able to one day walk on prosthetics and to attend university to get a science degree. He would also very much like to return to camp one day as a camp counsellor.

As a practicing musician, Zak can play the trombone and is also learning to play the electric guitar.

Kyle Zieger, Easter Seals 2009 Youth Ambassador for Northern Alberta

Easter Seals Alberta is proud to announce twelve-year-old Kyle Zieger as the 2009 Easter Seals Youth Ambassador for Northern Alberta.

This year, Kyle was recognized in his community and received a Citizen Award for his positive attitude.

Kyle was diagnosed with Duchene Muscular Dystrophy (DMD) at the age of five. DMD is a muscular disease that affects the body in many different ways.  In Kyle’s case, he has limited strength and mobility. Kyle walks in small distances to help maintain his strength, but uses his power wheelchair for most of his daily needs.

In 2008, Easter Seals financially supported the conversion of an accessible vehicle to accommodate Kyle’s power wheelchair. The conversion costs were approximately $35,000, not including the initial costs of purchasing the new vehicle.

“The contribution that Easter Seals made has made all the difference,” says Kyle’s mother Donna. “It has opened up new doors to new environments for Kyle and our family.”

The Zieger family was able to visit Johnston Canyon in Jasper National Park for the first time. Now Kyle can keep up with his friends in activities and has the confidence to move around and go places like never before.

Kyle has a great sense of humour and a positive and indomitable spirit. In his spare time Kyle likes drawing and writing short action-hero fiction stories. He also enjoys doing research projects on animals and wildlife. Kyle hopes to one day be an animal researcher. 

Allison Onslow, 2009 Manitoba Youth Ambassador

Eleven-year old Allison Onslow loves to fly - remote control airplanes, to be exact. This is a favourite hobby that she shares with her dad. She loves it so much she is a member of the Perfect Circle Flying Club.

Allison has other interests as well: riding horses, singing, dancing, playing guitar, keyboard and the harmonica. One day she hopes to play power wheelchair hockey when she can maneuver her chair.

Allison, who was born with cerebral palsy, has been very active with Easter Seals Manitoba/SMD Foundation. For Allison, being the 2009 Manitoba Youth Ambassador gives her and her family a sense of learning, self esteem and confidence. Allison has met so many wonderful people through the various campaigns and events. This is her way of giving back for all the good work that Easter Seals and SMD has done over the years.

Allison has participated in Easter Seals/SMD Leisure & Recreation programs by attending day camps over the past three years.

Jeremy Jones, 2009 Newfoundland & Labrador Easter Seals Ambassador

Easter Seals Newfoundland and Labrador pleased to announce that 11-year
old Jeremy Jones of St. John’s is selected to serve as the 2009 Easter Seals Ambassador.

The Easter Seals Ambassador is a child or youth with a strong spirit of independence, a “can-do” attitude, self-assurance and an intention to attain a post secondary education. The Ambassador represents the incredible potential and amazing abilities of children and youth with physical disabilities.

One of a twin born at 27 weeks, Jeremy weighed two pounds eight ounces at birth and was diagnosed with cerebral palsy, hydrocephalus, which required being shunted, and a severe to profound hearing loss. Despite enduring many surgeries and spending a lot of time in hospital, Jeremy is now thriving – he is a happy and healthy child with a contagious smile who never lets his physical disability hold him back from enjoying life.

Through his involvement in Easter Seals, Jeremy has made many lifelong friendships and enjoys many of the Easter Seals activities including karate, sledge hockey, bowling, swimming, and camping, as well as reading and hanging with his friends.

Jeremy is honoured to have been selected and is excited about carrying out his duties of representing children and youth with physical disabilities across the province.   

Casey Mackay, 2009 Provincial (Ontario) Easter Seals Ambassador

Casey MacKay is a young man who strives to help others at every opportunity.  This 12-year-old helps out at his school in the office and in the classroom. Casey’s career goal is to be a paramedic.

“I really want to help people. I picture myself saving people who are hurt by getting down to their level and helping them up,” said Casey, who wears leg braces for walking and uses a wheelchair for distances. 

As the 2009 Provincial Easter Seals Ambassador, Casey wants to tell people how Easter Seals really does help kids with physical disabilities succeed. “A lot of kids don’t even have wheelchairs. They need to get around even if they can’t walk. Without this we’d be glued to one spot. We’d miss all the fun in this world.” 

Casey has a great support network that includes his dad, mom, older brother Adam, and friends.  For three years now, he has played hockey for the Mississauga Crusaders and looks like any other hockey player in full equipment, with regular skates and stick. When Casey started playing hockey he had his hockey stick taped to his walker.  Now he’s out on the ice without the walker, just some assistance from his dad.  Casey’s brother, Adam, is also on the ice every week volunteering by helping other kids on the team.
 
Casey is a big Leafs fan and has attended the Maple Leafs Skate for Easter Seals Kids event at Air Canada Centre for the past six years. His favourite Leafs player was Boyd Deveraux (because he liked the sound of his name), but Casey proudly wears his # 60 jersey for his best buddy Carlton the Bear, mascot for the Leafs.  
 
Casey has had the opportunity to attend fully accessible Easter Seals Camp Woodeden and welcomed the chance to challenge himself by playing sledge hockey and learning archery.

When asked about what he looks forward to as one of the 2009 Provincial Ambassadors, Casey replies, “I like busy days and meeting new people.”

Kaitland Clapp, 2009 Provincial (Ontario) Easter Seals Ambassador 

Eleven year-old Kaitland Clapp swims, plays soccer and likes sailing. She is also a great singer and is learning to play the alto saxophone in school. Her younger sister, Madison has been known to complain about the noise when Kaitland practices the sax. It is hard to believe that this is the same child who was called ‘the miracle baby’ by the doctor when she was born.

Kaitland was born premature with a number of health issues, which meant countless visits to doctors, specialists and therapists. Kaitland learned to walk at the age of two, but had to wear a hockey helmet because she was having severe falls. At age four she had an operation that involved severing her left leg and rotating it, so that she could walk without tripping herself. She still feels quite a bit of pain in her legs during growth spurts. Kaitland has also had a spinal tap operation and continues to experience seizures, which doctors can’t completely explain the reason for.

Tammy Konning, Kaitland’s mom, tells how her daughter used to say: “Mom, why am I different? Why me, mommy?”

Mom’s response was always: “because you can handle it.”

And handling it she does, at every opportunity. Kaitland only uses a wheelchair for long distances and is confident running on the soccer field with her leg braces. She has had the opportunity to water ski and go tubing at a friend’s cottage and learned how to sail at an Easter Seals Regatta event in Picton. This summer she hopes she will have the chance to attend Easter Seals Camp Merrywood near Perth, Ontario.

“I’ve never been to camp and I’d like the chance to go sailing again. You don’t need your legs to do it, so you can just relax and be like everyone else,” said Kaitland.

Kaitland has a couple of ideas for her career. She would like to follow in her mother’s footsteps and become a kindergarten teacher. Like her fellow Provincial Easter Seals Ambassador, Casey, Kaitland is also thinking of becoming a paramedic because “it would be cool to help people.”

As the 2009 Provincial Easter Seals Ambassador, Kaitland wants to tell other kids with physical disabilities to “keep trying and you will succeed.”

Jordon Cotton, 2009 Easter Seals PEI Ambassador

The ambassador for this year’s PEI Easter Seals campaign is ten-year-old Jordon Cotton from Alberton.

Jordon has cerebral palsy and travels either with a wheelchair or a walker.  He is an amazing young man with a quick and ready smile and a huge love for hockey.  Go Maple Leafs!

Jordon is very excited to be the 2009 Easter Seals Ambassador.  “My motto is Shoot for the Stars.  I am very proud to be the Easter Seals Ambassador,” said Jordon.

Jordon will travel across PEI visiting schools during the annual Tim Horton’s Easter Seals School Tour scheduled for six days in April, and also take part in the Easter Beef Show and Sale.  He was also special guest on the 2009 Easter Seals Telethon, broadcast live from Confederation Centre of the Arts on March 1 on CBC Television.