Hope resident Danielle Sandgren was born with Alfi’s syndrome, a rare chromosomal disorder that causes mental and physical disabilities.
There are only 130 people in the world with the same condition. The doctor recognized it immediately when she was born and informed her parents Tracey and Ernest. It took three agonizing weeks of genetic testing to confirm the results. Life suddenly changed.
Providing the care of a child with disabilities is challenging, stressful – emotionally and physically, as well as financially. The ongoing costs to cover ongoing therapy and equipment necessary for a child with disabilities is expensive, and many of these costs are not covered by the health care system. All of this puts a financial stress on families wanting to provide all they can.
Mobility for Danielle was challenging and seemed unachievable, and made her feel different from everyone else. The family contacted Variety – The Children’s Charity for assistance in getting some equipment. Variety provided a specialized stroller for Danielle which allowed the whole family to go on outings in the community together.
Danielle, who is now nine years old, received life-changing mobility last year by getting an adapted tricycle funded by Variety.
“She got to laugh and to fly and to experience real freedom for the first time,” said her mom Tracey. “Variety is an organization that helps with dreams.”
When Danielle first got her bike, she and her mom were at the community garden and Danielle insisted on riding it all the way home. Danielle zoomed past their house and went all the way to the neighbour’s house, with her mom running after her the whole way.
Variety enables children to achieve little victories. Danielle’s victory is that she has been able to experience the gift of freedom. Variety believes that children who have special needs are champions, and is inspired by their courage and determination. With support, these children often achieve epic little victories as they conquer and rise above their individual challenges
The Sandgren family is grateful to Variety for providing a life changing experience.
“The bike didn’t make Danielle the same as everybody else; the bike made everybody else the same as Danielle,” said Tracey.
The 49th annual Variety Show of Hearts Telethon airs Feb. 14-15 on Global BC, beginning at 6 p.m. on Saturday, and winding up at 5 p.m. Sunday evening.
For more information visit www.variety.bc.ca