Why I Walk

I walk because too many families like mine are coping with this devastating chronic illness, and thousands more will face an unexpected kidney disease diagnosis in the year to come.

My Personal Story

In December 2014 after weeks of subtle weight gain and then one overnight event of profound edema, I was diagnosed with Nephrotic Syndrome, Minimal Change Disease (MCD), which affects the kidneys’ filtering system. You can learn more about NS here https://www.kidney.org/atoz/content/minimal-change-disease
 
My feet looked like Fred Flintstone's - so swollen you couldn't see my bones or veins and my face looked as though I had an allergic reaction overnight. If you saw the pictures, you wouldn't recognize me.  It was NO allergic reaction – rather my KIDNEYS! Who knew? MCD is idiopathic in kids -- which means it can arise without a known cause and so we need to learn more, more, more.  
 
I spent the first 9 months on the highs & very lows of Prednisone and Lasiks/Zantac - the evil wonder drug and the last 6 years on a newer/less evil drug, 1000mg of CellCept,/Mycophenolate. Ive tried to wean from the drugs but continually relapse. So yes this disease is medication manageable thankfully. It's been a challenging 7+ years, but I am strong -  fighting this mysterious battle with courage and tenacity all while showing NO PITY. A big feat for a 5-12 year old, right?! My family and I ask for your support and your compassion - no sorrow or pity! We are so super grateful always to my #1 Nephrologist, Dr. Joshua Zaritski, AI duPont Hospital for Children Nephrotic team  and especially to our NKF Family for their expertise and unwavering support and care!
 
WE participate in the Kidney Walk on Team Izzy, which has raised more than $15,000 over the last 7 years and has had the support of more than 100+ team members in the fight against Chronic Kidney Disease (CKD).
 
Since 2005, I have

• Stood on Capitol Hill in Washington DC Advocating with Congressmen/women for CKD patients.
• Been published in a cookbook promoting "Eating Well With Kidney Disease" in coordination with Nemours Children's Health System 
• Appeared on WBOC Delmarva Life TV Show to promote the NKF southern Kidney Walk and raise awareness about CKD
• Raised more than $500 from my (and my fabulous Friends) personal artistry watercolor "PRO KIDNEY" book marks 
• Walked in more than 8 Kidney walks , 25 miles, and was a founding walker of the Kidney Kids Walk in Wilmington.

There's NO stopping this kid!

Overall, I walk to support the lifechanging work of the National Kidney Foundation:
     - To ensure that families will have a place to turn when they need answers.
     - To keep up the fight for policy changes to protect kidney patients and living donors.
     - To drive innovation in transplantation and get more loved ones off the kidney transplant waitlist.