My 2023 TCS New York City Marathon Fundraising Page
Emily Finegold
I run for my daughter, Poppy, and all families affected by Alport syndrome, a rare kidney disease. Over the past year, we discovered that Poppy had blood and protein in her urine, but her pediatrician, nephrologist and urologist could not figure out why. Her kidney function was still great, and she had no other side effects that could lead anyone to a diagnosis.
Month after month, her urine was tested, and brave Poppy had multiple blood tests to check her metabolic panels. Could it be kidney stones? Could it be diet-related? Or, could it be one of the scary syndromes we found out existed at our first nephrology visit. We didn’t know what was causing her to have these symptoms - and neither did our team of CHOP doctors.
Our last resort on the path to finding answers was to have a kidney biopsy done. So, our little, brave Poppy went through with one, and we waited and waited for results. After the biopsy,her kidney function looked great, and everything was pointing towards kidney stones with one very, very, very rare condition to cross off our list…Alport syndrome.
Two weeks of waiting, thinking it was kidney stones, and feeling like we could finally relax, we got a call that it was, indeed,Alport syndrome. Not only did Poppy have it, but our entire family might be at risk, too. We would all need genetic testing,which would take months to complete.
Alport syndrome affects boys much worse than girls, so it was an especially scary time thinking of our baby, Max’s, future if he had it. Thankfully, all of us tested negative.
Poppy has what they call a “de novo” genetic mutation, and it’s not hereditary. She will take medication for the rest of her life. She will have to make sure she doesn’t pass it to her future children, and, depending on how her specific Alport develops,she could either have no symptoms, some symptoms or need a kidney transplant when she is older.
Every Alport mutation is different, and it’s so rare that the only way to stay on top of it is to have blood and urine checked a few times a year. Poppy will also get annual hearing and vision exams, since Alport can affect her eyes and ears, too.
As you can all see, our little, silly, amazing, dancing Poppy continues to enjoy life to the fullest, and we all work hard to help her stay on that path:) Since Alport is so rare, it needs a lot of funding to find a cure. The medicine she takes will help protect her kidneys, but it’s not a cure. There is a lot of work ahead, and we will never stop fighting for more research and more answers, so our Poppy, and the thousands of others who live with Alport syndrome, can have the best quality of life possible. Please support us in our mission.
From the Alport Foundation page: ALPORT SYNDROME
Alport syndrome is a rare kidney disease that is genetically passed down in families from parents to children, though sometimes it can occur spontaneously and you might be the first one in your family to have it.
The disease causes one’s kidney function to decline over time and can also result in hearing loss and eye abnormalities.
Prevalence is estimated to be less than 200,000 people in the U.S. making Alport syndrome a rare disease.
There are many Kidney disorders/diseases- here is the message from NKF
Right now, 37 million American adults are living with kidney disease, and I’m not okay with that. I walk because 1 in 3 people are at risk for kidney disease. I run because more than 1 in 7 people have it but aren’t aware.
I walk to raise funds that support the National Kidney Foundation, who was the first to identify kidney disease as a distinct, treatable illness. They developed the staged system of kidney disease diagnosis and treatment – a worldwide standard today – and release and update treatment guidelines to improve patient care.
Join me in making these advances possible by donating to my efforts!
Thank you for your support!
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