William has continued to need monthly transfusions and his neutropenia is not improving. Fortunately, other specialists have told us William is in pretty good shape, otherwise.
In Cleveland, we joined the Natural History Study and met with a neurologist, cardiologist, and ophthalmologist. After an EKG and echocardiogram, we learned William's heart is normal. William's eyesight is also normal, though all children with PS eventually encounter eye problems.
At Duke, we have a gastroenterologist (no pancreatic insufficiency), an endocrinologist (I check his blood sugar every other day and results are normal), and an audiologist (follow-up hearing is normal). We also see a metabolic geneticist and our hematologist. We have even been able to start well baby visits and get vaccines at the pediatrician.
We are all too aware that William's "normal" results really only mean "normal for now." That's hard. Pearson Syndrome is not like other illnesses. His is only going to get worse. For now, our goal is to keep him as healthy as possible for as long as possible and hope that research and medical advances catch up. We believe The Champ Foundation is helping put the odds in his favor.
That is why we have dedicated enormous amounts of our time over the past two months getting this website and foundation up and running. The process of starting a non-profit, however, is challenging. We would not have been able to get here (and raise $64,000+) without the efforts of our family and friends. Specifically, we need to thank:
1. Josh Jensen
This guy designed and put together our entire website. He is magical with coding and gave me access to this blog and picture gallery. He put up with us for weeks of back and forth. We knew an excellent website was critical and the final product could not have been better.
2. Buffalo Spree and Chastity Taber
This team designed our fabulous logo! We sent Chastity a very rough sketch of what we were hoping the logo would look like. The "C" in Champ is a portion of the mitochondrial genome with a piece missing, representing William's deletion in his mitochondrial DNA (see Jeff's sketch below!). We chose green because it is the color for mitochondrial disease awareness. Chastity turned our idea and rough sketch into a professional and amazing design. A doctor recognized the genome, which still makes Jeff fist pump!
3. St. Vincent Press (Rochester, NY)
This printing company provided letterhead, stationary, envelopes, and business cards. It made us feel very official, and they turned out beautifully!
4. Our parents
Without our parents, we would never have been able to start this non-profit, remain in school, take care of William, and stay sane. Our parents scheduled medical appointments, fed us, babysat William, helped us sort through 501(c)3 paperwork, and spent a lot of time listening to us cry. For a few weeks, it seemed like a foundation was too difficult on top of everything else. Because of their encouragement, support and suggestions, we are on track to reach our very ambitious goal.
5. Our donors
Donations have come from all over and in all sizes. Without exception, our hearts are warmed with each check we open and each email for online donations. It is amazing to know that we aren’t in this fight alone. We can do it!