GENESEE COUNTY/Six year old girl in Corfu helps raise funds for her cousin in Louisiana who has been diagnosed with a rare blood disorder that has no cure

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Six year old Ainsley Strang has raised $1,007 for her cousin Jaide Alexyn, 22, of Louisiana, who was diagnosed with a rare blood disease at the end of January 2021.

From GoFundMe page

Jaide, a 2016 graduate of Pembroke High School and UB graduate, was diagnosed with TTP,  (Thrombotic Thrombocytopenic Purpura) a blood disorder that causes platelets to clot, as well as low red blood cell counts.

According to a GoFundMe page set up for Jaide, she was diagnosed with Acquired TTP. With Acquired TTP, the body begins creating autoantibodies that prevent the ADAMTS13 enzyme from working to prevent the clotting. The small clots created without the platelet regulation from the ADAMTS13 enzymes cause general symptoms such as terrible migraines, bruising, and neurological issues as well as major organ damage and death if untreated. Treatment can help to overcome an episode, but effectiveness of treatment varies for every patient, and it is costly and time consuming.

Last July, Jaide and her boyfriend Brandan Brochey, moved to Louisiana to start their life together. Because Jaide has not been at her job, or a resident of Louisiana for at least one year, she is not eligible for disability or unemployment.

A lot of medical expensive have been accumulating after Jaide was hospitalized twice for treatments, so her cousin Ainsley wanted to help her out.

Submitted photo

With the help of her mom Melissa, Ainsley made plantable seed paper hearts to sell to her family and friends for $2.00 each. The hearts contain a Monarch Butterfly seed rescue mix which are nectar-rich flowers and everything a Monarch butterfly needs to survive.

Ainsley worked very hard making each heart and her mom helped her packaged them. Her original goal was to raise $40.00.

She is now looking for someone or a business to match was she has raised. Contact her Mom Melissa Mccoy Strang on Facebook if interested in helping out.

Submitted photo

According to Jaide’s GoFundMe page:

Fundraiser for Jaide Alexyn by Tammy McCoy : Unique to Rare, Jaide’s Journey with TTP (gofundme.com)

◼ A diagnosis of TTP is challenging, and a patient needs to be closely monitored as a crucial step for survival. 
◼ Although major advances have been made in the management of TTP, there is no cure, and due to its rarity, exact causes are still unknown.
◼ TTP is life long and relapses can be expected to occur in up to 60% of the patients.
◼ Jaide will need continual follow up to try and get her back to a good quality of life.
◼The cost of treatment and the time off of work has created a financial burden that Jaide cannot get through without support.

From GoFundMe page

Jaide and Brandan have made a few friends in Louisiana who have been helping them out. Family from WNY have visited, but Jaide will need financial assistance throughout her rare and life threatening illness.

According to her GoFundMe page:

“Because of the lengthy treatment requirements, there is a significant medical cost that has fallen on Jaide. Like many of us, insurance does not cover much of the medical costs. Jaide has accumulated $223,873.28 of medical debt. Once treatment for her current episode is completed, if everything goes well, she will be looking at about $310,000 of medical debt. However, given the extensive time that she has been unable to work, her more urgent concern is paying her bills and general living expenses such as food, rent, and transportation.”

Donations to her fund will go to prevent financial hardships that will follow her treatments.

They will be used to pay bills and for living expenses.

Jaide and Brandan both work and contribute to their expenses, but live on a tight combined income. Being down to one income since the end of January, they have only been able to stay afloat through financial help from close family members, a solution that is temporary and will not last long.

As of today, the GoFundMe page for Jaide has raised $12,322 of their $50,000 goal. The link to her page is below.

Fundraiser for Jaide Alexyn by Tammy McCoy : Unique to Rare, Jaide’s Journey with TTP (gofundme.com)

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