Emma Jane Raftery was born on February 17, 2004.  She had long eyelashes and rosebud lips.  She was perfect.

Emma has always been a bright, inquisitive, and sweet child.  She loves to learn new things and has a terrific memory for learning.  She knew her ABC's, numbers, and all her shapes, even an octagon, by age 2. 

It wasn’t long before her love of dance and dress-up took off.  She was a twirling vision of pink tu-tus and frills, and we were her enamored audience.  She was a happy and healthy child.  What more could we want?

In April 2007 we went to Florida to visit her grandparents.  For a surprise, we decided to meet her cousins in Disney for an overnight trip.  We knew for Emma, seeing "the castle" and all the princesses were going to be mind-numbing experiences!  She LIVED for these fairy tale icons.  However, something was not right.  She seemed very irritable and did not want to see the princesses.  She began vomiting early the next morning and it continued for another day.  She ended up in the Emergency Room and was admitted to the hospital.  Doctors found that she had Proteinuria (protein in her urine) and extremely high blood pressure.

We came home and really believed she would be fine; however, we became regulars at the Children's Hospital in Boston.  Emma underwent frequent urine tests, blood samples, and blood pressure monitoring.  She didn’t' look different at this point, but she was less energetic.

In July, things quickly got worse. She was rushed to the hospital with an Intussusception (telescoping of her bowel), luckily they caught it in time and she did not have to have surgery, only an air enema - which was brutal for a 3 yr old to go through.

The following week she had her Kidney Biopsy. Her blood pressure continued to be very high, and was placed on 2 blood pressure medications.  Further work revealed she had LVH (Left Ventricular Hypertrophy), or swelling in her left ventricle...also life threatening, but at this point we are controlling it. 

Then we found out she had FSGS.  We were heartbroken.  We had read about FSGS online.  We knew it meant kidney failure was possible, that transplants generally fail, and that her life would be filled with toxic medications.  Why was this happening to our little girl??

She started prednisone in August, and continues on it today.  She is being weaned off of it now, as she has become resistant to it.  The side effects are cruel.  It has stunted her growth, caused her to gain nearly 20 lbs, has unwanted hair growth, anxiety, insomnia, extreme mood swings, and joint pain.

Now, what has our inquisitive Emma learned?  She knows when and what medications are due and reminds her parents and babysitters often.  She knows if a food is salty, it is bad for her.  She knows what a "healthy snack" is, but doesn't always want them.  She knows she gets "nervous" at times and asks if it is because of her medications.  She prays every night that her kidneys will get better and she can eat a pickle.

We are nervous too.  We wait every week after her tests to find out if this is the week she will start chemotherapy.  The side effects become more serious...possible lymphoma (which happens to many children), bladder or skin cancers, sterility...or maybe she will be "lucky" and just end up with nausea, diarrhea, and hair loss. Contemplating all of this for your child is devastating and surreal. Oh, how we wish we could trade places with her.

This is supposed to be the age of innocence.  She has been exposed to and has had to endure things beyond her nearly 4 years.  We pray that her life will be all that we ever hoped for. We pray that more research will be done to find less toxic medications we can give our children.  Most of all, we pray for a CURE.

Now, what have we, her parents, learned from all of this?  We have learned to never lose hope.  WE believe that miracles can and do happen.  We have learned that we have a wonderful family, amazing, supportive friends, and a child that continues to teach us lessons about what is truly important in this life.  Like we said, she is perfect.

Greg and Siobhan

Help Emma and the thousands of patients affected by FSGS. Make a gift in honor of Emma to The NephCure Foundation by completing the form below, or, send your gift made payable to The NephCure Foundation to the following address:

The NephCure Foundation
Attn: Emma's Hope
15 Waterloo Ave
Berwyn, PA 19312

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