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TTP

March 7, 2021 - 2:25pm
posted by Billie Owens in news, corfu, TTP, GoFundMe, Monarch butterflies.

Photos and information from Melissa Strang:

Talk about stepping up, how about leaping up. A 6-year-old with a big heart came to the aid of her 22-year-old cousin who was diagnosed in late January with a rare blood disorder that can result in serious, life-threatening health problems.

Jaide Alexyn has thrombotic thrombocytopenic purpura, or TTP, which causes clots to form in small blood vessels throughout the body. These can limit the flow of oxygen-rich blood to the body's organs -- like the brain, kidneys and heart. It requires emergency medical treatment.

That's been very expensive and the road to getting the disease under control is expected to be long and rocky, possibly something she'll have to grapple with all her life.

Alexyn's cousin, first-grader Ainsley Strang, wanted to donate to the GoFundMe account Alexyn's family started, so she and her mother came up with something homemade to sell that also benefits endangered monarch butterflies.

Ainsley started making heart-shaped, handmade, plantable seed mix cakes -- a blend specifically enjoyed and needed by monarch butterflies. But the little go-getter-turned-artiste also made paintings to sell and sent these along with letters to friends' grandparents in nursing homes to brighten their day.

"She started with a donation goal of (raising) $40 and we had no idea her FUNdraiser would be so successful," her mother Melissa Strang, wrote in an email to The Batavian. "She raised $1,007 ... A friend of mine, Danielle, from school reached out who was so touched by Jaide’s situation and invested so much of her time, and helped spread the word of Ainsley’s efforts.

"Before we knew it, the orders were flying in and our $40 goal was smashed! My daughter raised, what I consider, a hefty amount of money and we are beyond proud of her."

What Ainsley's family would really love is for someone or some business in Genesee County to match the child's donation for Ainsley's 7th birthday, March 10th; how happy she would be!

They are keeping their fingers crossed.

Meanwhile, Alexyn is trying to stay strong and do what she needs to do to regain her health. It's been hard because she's a recent college graduate just starting out her life as an adult, working and going to job interviews, like all of us, amidst the coronavirus pandemic.

"This is a life-changing condition that has altered Jaide’s life so she will require significant financial support," says Strang. "Eventually she will be able to work again, but unfortunately relapses and doctors visits will be a way of life. ... Hopefully, the doctors will get this new disease under control for Jaide and COVID will also subside soon. For now, she needs help with her new normal."

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