2nd Annual Molly Modes Family & Friends Fun(d)raiser
Hosted by: Jakleen Ochalek and Kate Shaughnessy

The 2nd annual Molly Modes Family and Friends Nephcure Fundraiser will be held on May 19, 2008 at the Italian American Club in Livonia, MI. Guests will enjoy live music, food and beverages, silent auction and raffle with great prizes including Piston Play-off floor seating, autographed sports memorabilia, Detroit Tiger tickets, and much more!

Date: Monday May 19, 2008

Time: 5:30 P.M. – 8:30 P.M.

Location: The Italian American Club
39200 5 Mile Rd * Livonia, MI 48154

Molly's Story:

"Hi!  My name is Molly.  I am 10 years old, and I know about hardships.  I was diagnosed with a kidney disease two years ago.   It isn’t easy to live with it every day.

I used to wake up with swollen eyes and get sick all of the time!  I missed a lot of school because and no one could figure out why. I was tired all the time!   This went on for a couple of years. My mom took me to a chiropractor because the regular doctor could not figure out what was wrong with me.  One day, I got so sick that the pediatrician did some tests and sent me to the emergency room.  They admitted me to the hospital that day.  It was the day before my 8th birthday, so I had to spend my birthday laying in bed and getting tests.  It was not fun.

That is when the doctors told me I had a kidney disease called Nephrotic Syndrome.  They told me to take medicine and it would probably go away, but no salty food or pizza until it was gone.  I took the medicine and ate the foods they told me to, but I didn’t get any better.  The doctors finally said that I would have to have a renal biopsy.  When I got back to my hospital room after the biopsy I had to lay flat on my back for 12 hours.  I had to eat while laying flat on my back! 

A few weeks after my biopsy I met Dr. Mattoo.  He told me I have a kidney disease named Focal Segmental Glomerular Sclerosis (FSGS).  He explained that it’s the kind of kidney disease that usually never goes away.  I was shocked!  Dr. Matoo gave me a new medicine to try to get the disease in remission.  It didn’t work, so we tried another.  That one didn’t work either.  Next, Dr. Mattoo said we should try a third medicine with plasmapheresis.  I had to go back to surgery to get a pheresis catheter inserted into my chest.  It was two tubes that hooked me up to a machine that cleaned my blood. I had to go to the hospital 3 times a week for pheresis.  It took about half the day, was very boring, and sometimes made me feel sick.  The worst part about pheresis was that I could not go to school, or anywhere for two months.  I just stayed in the house.  My friends couldn’t come over because they might have made me sick.  Because of the pheresis, I had no immune system.

I have been admitted to the hospital 6 times.  I miss a lot of school because I still get sick a lot.  I have to go to see Dr. Mattoo every few weeks and get my blood drawn.  I have gotten used to the needles, but I still don’t like missing school.  Because of FSGS there are many foods I can’t eat.  No salt and no potassium.  Both of these are in most of the foods kids like to eat.  I still feel tired a lot, and sometimes I’m afraid to play with friends because I think I might get sick and have to go back to the hospital.  All of the medicines I take make my immune system weak, so I still get sick easily.

I have taken a lot of different medicines.  One medicine made my face get really big.  Another medicine made me grow hair.  I grew a uni-brow and used a trimmer to cut the hair on my arms and legs.  Sometimes people who had not seen me for a while didn’t even recognize me.

The hardest thing about FSGS is that no one really knows what will happen to me.  About half of the people diagnosed with FSGS have to start dialysis because their kidneys stop working.  Some of them get a new kidney, but a lot of times the FSGS comes back.  The doctors don’t really know what causes this disease, and they don’t know how to stop it or cure it.

I am a normal kid, but I have a kidney disease that causes hardship in my life."

Read Molly's Essay on "Hardships".