Alanna’s Urgent Genetic Testing Fund for EDS Subtypes

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6 donors
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$500 raised of 

Alanna’s Urgent Genetic Testing Fund for EDS Subtypes

Alanna’s Urgent Genetic Testing Fund for EDS Subtypes

0% complete

$500 raised of 

6 donations
Donation protected
Alanna has been struggling with her health for a long time, but last December it became clear that something was seriously wrong. Her cardiologist sent her for testing, and she was quickly diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). Her symptoms were so severe that the specialist didn’t even need to complete the full test before confirming the diagnosis. She was placed on a heart medication usually prescribed for congestive heart failure to help manage her condition.

In early August of this year, a rheumatologist who specializes in Ehlers-Danlos Syndrome officially diagnosed her with hEDS. The next critical step is genetic testing to determine whether she has another subtype, including vEDS, which comes with a much higher risk and a shorter life expectancy. This possibility is terrifying, but the testing is necessary to know what she’s truly facing.

Unfortunately, insurance will not cover this genetic testing, and with Alanna’s many medical and emotional needs, I cannot afford to pay for it myself. We are still waiting on her disability decision, but in the meantime, this test is something she urgently needs.

If you are able to help in any way—whether by donating or sharing—your kindness will not go unnoticed. It would mean the world to Alanna to know there are people who care about her and want her to have a fighting chance. Her father has not been involved, so it has been left on our shoulders to navigate this alone.

I am deeply embarrassed to have to ask for help, but I cannot stand by and do nothing for my daughter. Alanna is too proud to ask for herself, and it has been heartbreaking to see how much this has affected her spirit. She has fallen into depression, struggling to accept that this is her reality and that she must now rely on the compassion and empathy of others.

From the bottom of my heart, thank you—whether you donate, share, or simply keep Alanna in your thoughts.

Co-organizers3

Kelly Sidorowicz
Organizer
Bohemia, NY
Profile photo of Alanna Sidorowicz
Alanna Sidorowicz
Co-organizer
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