avatar

Fighting for a cure

mott blog - faith falzoneThis weekend, we attended the Griese, Hutchinson, Woodson “Champions for Children gala at the University of Michigan. It is a fundraiser for C.S. Mott Children’s Hospital and the Charles Woodson Clinical Research Fund. Last year, my daughter Faith was the guest of honor. She was there as a representative of the many children at Mott who have a disease for which there is no cure.

Last year she was given a pass by her doctors to leave the hospital for the evening to attend the gala.  She had just had most of her colon removed and she had to have another surgery before she was able to be discharged from the hospital. I remember being skeptical that it was a good idea for her to attend. Her doctors had to change her total parenteral nutrition schedule, and I was worried that she would get too tired.

The morning of the gala, however, Charles Woodson came to see her in the hospital.  That changed everything. I knew from that moment it was going to be a great night for her. She had an instant connection with Charles, and finally – after a few long weeks in the hospital – she was starting to act like herself.

As magical as the night was, I left that evening and went back to the hospital to face the reality that we deal with every day. Even though Faith had been invited to attend because of her disease, I remember wishing that night that Faith had a disease that wasn’t so rare. So that I could feel more hopeful for a cure for her.

We have learned a lot about Faith’s disease – hyperganglionosis – in the past year.  We’ve learned that Faith needs 2.5 liters of fluid daily to stay healthy. That she needs to stay away from anyone who has a virus, and that she has to stay home when there are sick kids at school. We know now that she can handle about three hours at a time of school, and often that seems to be a stretch. We know that she can’t handle regular illness like the rest of us so we do everything we can to keep her healthy. We know that she needs fluids or tube feeds every three hours. We know that she has chronic yeast infections that are painful and so very frustrating. We still have to do wash-outs and she still – after all this time – hates them, but is mature enough to understand it is one of the big reasons we are able to be out of the hospital. We know that there is absolutely no rhyme or reason to her ostomy explosions, and her stoma doesn’t care if she’s home or at school. We know that some days she’s just too tired to do anything, and so those days she rests, because if you push her that’s when she gets really sick.

charles woodson & faith falzoneIt’s true, we’ve learned a lot.  But we haven’t learned enough.

I want a cure. Not a treatment, but a cure.

Last week she had a check-up, and her surgeons are thrilled that she has been doing so well. Near the end of the appointment, almost as we were getting ready to leave, the doctor who has been there from the beginning with us said that they have started research on diseases of the colon similar to Faith’s disease. She said that they are hoping to find a cure. Right here, at our hospital.  She said that they were inspired by Faith.

This is the University of Michigan, and some of the most brilliant doctors in the world are working on a cure that would certainly change Faith’s unclear future.

So, as much as the Woodson event meant to me last year, this year it seemed to mean so much more. I wanted to walk around and introduce my daughter to everyone there, and show them where their money is going. I wanted them to see the face of the child they are fighting to find a cure for. I wanted them to understand how much she deserves to be well.

charles woodson clinical research fundThe night before this year’s gala, I was telling Faith she would get to see Charles tomorrow. I was telling her that the money raised tomorrow could go towards Dr. Newman’s and Dr. Teitelbaum’s research to help find a cure for her disease. She smiled and said, Mom I can’t wait to see Charles, but what about Mira and Faith? Mira was the other patient featured last year, and Faith is our good friend from Mott who has Cystic Fibrosis.  “I’m glad they are trying to cure my disease, but we can’t let them forget about my friends, they need a cure too.”

My daughter and her friends at Mott are children who have faced extraordinary obstacles and have developed character that surpasses that of many of adults. Faith will continue to do extraordinary things, whether a cure is found or not, I just happen to believe that she deserves the very best life has to offer, in the very best body we are able to give her.

Thank you for helping the Charles Woodson Clinical Research Fund enable Mott doctors to find ways to give her and other Little Victors a cure.

Additional resources:

—————————————————————————————————————————————————————

mott blog - mary ann bell thumbMary Ann Bell is mom to Faith and Will.  They live in Dexter, Michigan.  You can read Mary Ann’s full post of this message on her blog, My Faith’s Journey.

 

 

 

best children's hospitalUniversity of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.