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Mac's Story
Our precious son, Mac, was diagnosed with Childhood Nephrotic Syndrome after his five-year well-child checkup. We were completely shocked and devastated by the news. Being a physician, Mac’s dad knew enough to know that this was going to be life-changing. How could Mac look so normal and healthy and be so sick? This is a question we continue to ask.
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Allie's Story
Allie is a smart, vivacious 6 yr old. She was diagnosed shortly after turning 5 with Nephrotic Syndrome. Her doctor put her on prednisone to start. After little response to the prednisone, he increased her dose, which caused personality changes, weight gain and apparent self consciousness in my little girl.
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Christi Leslie
So, when you are so tired you can't get up… when you look in the mirror and don't recognize yourself… when you're kept up all night from your muscles cramping everywhere because they can't pump enough potassium in you to keep up with the diuretics… when your feet crack so deep you can't stand to walk on them… when you are at your darkest moments… remember there is always HOPE! There are happy endings!
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Matthew's Story
Matthew was diagnosed with Nephrotic Syndrome in November of 2005. After a series of treatments and countless blood tests nothing seemed to be helping. In the fall of 2006 a kidney biopsy revealed that Matthew had FSGS. Matthew's parents, Michael and Dana were devastated by the diagnosis but they promised to never give up hope.
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Kevin's Story
Early on I knew that I would eventually need a kidney transplant. My attitude has continually gotten better as I have had to deal with this disease. Chronic illnesses are tough mentally because they are always following you around and start tugging at you when you least expect it.
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Sage's Story
On Friday night, October 5, 2007, our life changed. After spending three days at Children’s Hospital of Philadelphia (CHOP), Sage was diagnosed with Minimal Change Nephrotic Syndrome
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Blake's Story
It has now been five and a half years since Blake was diagnosed. Through it all Blake has kept a great attitude and he is our strength. There are days that it seems so overwhelming, but he gives us his sweet smile and we know we have to go on.
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Ellie's Story
Ellie is now almost five years old and a year into remission, thanks to extraordinary efforts from her Nephrologist and medical team. She will be starting Kindergarten in the Fall, she loves to play with her younger sister, swim like a fish, run like the wind during soccer and embrace life to the fullest.
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Noah's Story
Noah is now five years old and five months past the transplant. He is doing fantastic! We feel very blessed that everything is going well. He is one of the lucky ones; there has been no sign of recurrence of the FSGS. Full Story...
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Christopher's Story
Christopher is six years old and just finished his Kindergarten year at West Liberty Elementary. Christopher has always been known as a fun-loving and positive boy.
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Keagan's Story
When you are six year old boy, the hardest decision you should have to make is one cookie or two with your glass of milk; for Keagan Turrubiates things will never be that simple.
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David's Story
David Warner was a healthy 15 year old boy who has always been a good student and very involved with sports and loves to play baseball and golf. However, on September 9th, 2002 David was diagnosed with Focal Segmental Glomerulosclerosis (FSGS).
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Alan's Story
I was first diagnosed with Nephrotic Syndrome when I was three years old. I am now 28 years old and doing much better.
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Krista's Story
Krista was diagnosed with Nephrotic Syndrome when she was one year old. Krista is now 15 years old and hasn't relapsed in three years.
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Marcus's Story
Marcus was diagnosed with FSGS when he was three years old. Marcus is now a nine yea old boy who loves fishing, biking, and playing video games.
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Liam's Story
Liam was diagnosed with FSGS when he was two years old. He is now 18 years old and has battled through thick and thin to get where he is today.
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Stacey's Story
Stacey was diagnosed with Nephrotic Syndrome when she was eight years old. She is now 34 years old and living proof that one can beat Nephrotic Syndrome.
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Molly's Story
Molly Modes was diagnosed with FSGS just before
her eighth birthday.
When asked to write an essay on hardships,
this is what she wrote.
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Emma's Story
Emma Jane Raftery was born on February 17, 2004. She had long eyelashes and rosebud lips. She was perfect.
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Lexi's Story Looking back at the pictures from Lexi’s 6th birthday party, I am reminded that she was not quite herself that day. She had been complaining of a stomach ache.
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April's Story
“I grew up healthy, and out of nowhere, my kidneys failed on me,” said April. “Living with FSGS has been hard for me. The hardest part was accepting my illness and taking my medications.”
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Angelica's Story
Having FSGS has changed Angelica’s life, and is something she must deal with physically and emotionally. However, she is determined to help raise awareness for her condition.
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Tim's Story
In 1987 I was a 19-year-old freshman attending Hofstra University (in Uniondale, NY) on a full scholarship for lacrosse when one day I felt ill and went to the doctor.
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Adriana's Story
In February of 2005, we noticed that our 17-month-old daughter, Adriana, was coughing excessively. As concerned parents, we took her to the emergency clinic several times.
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Renita's Story
In 2004 I was a busy working mother who felt fine. Looking back, I remember now that my ankles always seemed to have water in them, my eyes would get puffy sometimes, and I could make indentions on my legs when I had water in them. But I had no reason to worry.
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Christian's Story
20 Years of FSGS in 2500 Words.
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