June 1: Happy June!
The Champ Foundation is organizing an online, 22-day fundraising campaign from June 1 to June 22. In honor of William’s 2nd birthday on June 22nd, we are asking our supporters to donate $22 (or $122? $222? $322?) to our CrowdRise campaign. We have a huge, 22-day goal of $6,222! Check out our page www.crowdrise.com/22for2/fundraiser/thechampfoundation to donate!
Every day from now until William’s 2nd birthday, we will be posting a story about William, Pearson Syndrome and The Champ Foundation. We hope you enjoy following along on Facebook! We’ve also just sent our Spring newsletter, and have added it to our blog! Check it out!
(You are welcome to send a check instead of donating online and still contribute to our goal! Please send a check to 2712 Little Rogers Road Durham NC 27704 before June 22 with #22for2 in the memo. We can easily add offline donations to our CrowdRise campaign!)
June 2: #22for2 Post 2: William’s diagnosis story
I had no complications during pregnancy. But, William was born via cesarean after his heart rate dropped during labor and was immediately taken to the NICU for rapid breathing and paleness. He spent a week in the NICU under an oxygen tent. He received multiple red blood transfusions because he was so anemic. When we were able to go home, I was so happy, because I thought the worst part was over.
But William’s bone marrow did not start working, and he had a bone marrow biopsy testing for leukemia when he was 6 weeks old. It wasn’t the first time I had to watch doctors and nurses pin him down for an IV, but it didn’t make the IV in his head or watching him pass out from the anesthesia any less awful. The leukemia results came back negative, but there were other “unusual findings.” This meant little to us because we thought the worst was over, again.
On September 10, 2015 we entered our hematologists office, where we had spent many hours before. I had come late from class, and met Jeff and William there. The doctors waited until I arrived. There was a resident and a medical student in the room when our hematologist told us that William had Pearson Syndrome. The worst, it became evident, was very true.
There was no plus side, no percentages of survival, no opportunities to participate in a clinical trial, no research being conducted. I remember the next day, our doctor told us about some kids who lived to 7 or 8, like it was a good thing.
I look back on this difficult time with gratitude for the 22 months that have followed. The past 22 months have allowed me to reflect on the saddest and darkest part of my life, while also being aware of the amazing, hopeful and rewarding moments to come.
William’s relatively stable health, The Champ Foundation’s success, and the incredible research projects we have funded have given us hope that we could not possibly have known about 22 months ago. Over the next month leading up to William's birthday, I’ll be posting about how we started the foundation, the challenges we’ve faced, and why we are so optimistic about the future for kids like William. Stay tuned!
June 3: #22for2 Post 3: Starting a 501(c)3 foundation
Two major events led us to the formation of a 501c3 not-for-profit organization dedicated to finding treatment and a cure for Pearson Syndrome.
First was the realization that there was no Pearson Syndrome research being conducted. The day after William was diagnosed, we were sitting in the cardiologists’ office waiting for an echocardiogram. I was desperately searching on my phone for any sign of on-going research that might lead to a cure. My searches led me back to a big mitochondrial foundation, but I could not find a single project related to mitochondrial deletion disorders. It was so discouraging!
Second, and the biggest reason we started the foundation, was our trip to Boston Children’s Hospital. We went to Boston Children’s to receive a second opinion/confirmation of William’s diagnosis. At this appointment with Dr. Suneet Agarwal, it became evident that he wanted to be focusing his lab’s efforts on Pearson Syndrome, but had been unable to secure funding because it was so rare. It was unacceptable to us that incredibly smart, talented doctors at the best institution in the world wanted to be working toward a cure for Pearson Syndrome but couldn’t because lack of funding. We immediately realized we had to change this reality, especially if we wanted change in the near term.
We got home from Boston Children’s Hospital on October 15, 2015. By November 4, we submitted our Articles of Incorporation and by November 11, we received our EIN number. We launched our website by the end of November (pictured above) and we officially had our determination letter to be a 501(c)3 not-for-profit organization by early January 2016. By January 10th we had raised our first $100,000 and less than two months later provided a grant to Dr. Agarwal to begin working on treatment and a cure for Pearson Syndrome.
June 4: #22for2 Post 4: What is Pearson Syndrome?
Pearson Syndrome is a very rare mitochondrial disease. Mitochondria are responsible for energy production in many cells throughout our bodies and defective mitochondria cause serious health problems. Mitochondria have their own type of DNA, referred to as mtDNA. Pearson Syndrome is caused by a large scale deletion in mtDNA. This deletion happens at random and there is no apparent environmental or hereditary cause, even though most other mitochondrial diseases are maternally inherited.
We estimate there are about 50 children living with the diagnosis today across the globe. Given its rarity, it is impossible for doctors and scientists to predict how the disease will progress in any individual. Most children with Pearson Syndrome have bone marrow failure (anemia, neutropenia) and pancreatic, heart, liver and brain issues. The greatest threats to survival include sepsis and lactic acidosis. Kids with Pearson Syndrome develop Kearns-Sayre Syndrome with age.
An interesting aspect of Pearson Syndrome is called heteroplasmy, which means that the disease causing deleted mtDNA and healthy mtDNA exist simultaneously. Scientists suspect heteroplasmy with a higher ratio of deleted to healthy mtDNA might cause more problems. So, shifting heteroplasmy might be a promising avenue for treatments and a cure. Much of the research The Champ Foundation has funded is grounded in this idea.
William was anemic and relied on red-blood transfusions until he was 14 months old. He has yet to experience many other symptoms of the disease. It is very likely that he will, unless we can better understand Pearson Syndrome and how to alter its course.
June 5: #22for2 Post 5: Challenges of starting a non-profit
Starting a 501(c)(3) not-for-profit is not easy! First, we needed to set up The Champ Foundation up as a corporation in North Carolina. To do this, we needed to write by-laws, create a Board of Directors and follow corporate processes standard for not-for-profits.
Next, we had to apply for tax-except status. The rules for securing, and maintaining, tax-exempt status are overwhelming, lengthy, and complicated. For example, the IRS demands that the giant application for tax exempt status be mailed in a very specific order. If one section is placed out of order... application returned! If there's a staple instead of a paper clip... application returned!
Now, we have ongoing requirements to report our fundraising and grant making activity to the IRS. Since we are a public charity (meaning all donations are fully tax-deductible), we are required to carefully track donations and prove that a large portion of our support comes from the general public.
Neither of us are accountants so we've had to learn a great deal. We do this work ourselves so that every dollar we receive can be passed to researchers. (Although we do have amazingly helpful business-oriented friends and family willing to volunteer time and support with these steps)!
While this process has seemed daunting at times, there is no effort we wouldn’t take to do our part in curing Pearson Syndrome. William is motivation enough, but the outpouring of support from all over makes the job a lot easier.
I was going to post a picture of our by-laws or IRS application, but decided that was very boring. Instead, here is William painting yesterday at his grandmother’s house!
June 6: #22for2 Post 6: Fun parts of starting a non-profit
While setting up a non-profit was hard (see yesterday’s post), there were some really fun parts. Here are a few examples:
• Picking the name: We started calling William “Champ” in the NICU. He was so tough (and still is). Before he was even six weeks old, he had multiple IVs in his feet, arms, belly button and head. The decision to call our non-profit The Champ Foundation was actually really easy. We looked it up to make sure it didn’t already exist, made sure the Gmail/FacebookIinstagram pages were available, and decided.
• Creating the logo: Jeff created a rough draft of the logo. The “C” in Champ represents a portion of the mitochondrial genome with a piece missing, representing William’s (and others’ with Pearson Syndrome) deletion in his mitochondrial DNA. We chose green because it is the color for mitochondrial disease awareness. A graphic designer at Buffalo Spree magazine donated her time and turned our idea and rough sketch into a professional and amazing design. So far, we’ve even had a few doctors recognize the genome!
• Gear: As you might be able to tell, we love wearing Champ gear. I think Jeff is on a daily rotation between his three different Champ shirts. I particularly love our recent gear and use the coffee mug every single morning. It’s one of my favorite things to receive messages or notifications about people repping Champ t-shirts and hats! Thanks for sharing!
• Social media: We barely used Facebook before William was born! BUT…..now I post all the time. I’m always excited to provide updates on the foundation. And since I take about 3 million pictures of William every day, I enjoy sharing them with people who care about his health and happiness (almost) as much as I do! I always appreciate your comments and well-wishes.
June 7: #22for2 Post 7: Best part of starting a non-profit
Yesterday I posted about some “fun” things that have been associated with starting a non-profit. But obviously, the best part about The Champ Foundation is the knowledge that we are doing everything in our power to cure Pearson Syndrome for kids like William. We have real hope that the research we are funding in Boston, Cambridge and Israel will be instrumental to the clinical trials and research advancements that lead to a cure. This prospect is the only reason we started, and have worked so hard, on The Champ Foundation. William is worth it.
June 8: #22for2 Post 8: More Champs
After William was diagnosed, we were in the hospital, desperately searching for information relating to Pearson Syndrome. We got in touch with a family whose son has Pearson Syndrome and she invited us to join the Pearson Family online support page. I spent hours scrolling through pictures, posts, comments and discussions on the page.
Since then, the group has been a source of emotional support and critical information. Though none of the kids experience the same symptoms or same trajectory of complications, it is obvious that PS parents are the experts, even among doctors.
The connection to these families is one of the most emotionally challenging things I’ve ever dealt with. Watching parents watch their kids in the PICU, in the ER, before surgery is painful. Watching parents watch their kids lose their hearing and eyesight and ability to walk is crushing. But it gets worse. Every few months there is a post about the most awful thing you can imagine. There are barely words to describe how I feel on those days, and I can’t even begin to imagine how those families feel.
When Jeff and I founded The Champ Foundation, we founded it in honor of William. But as we have learned the stories of other children struggling and fighting this disease, we decided it was critical to include them. The More Champs tab is one of the more difficult, but also one of the more important parts of our website and overall mission. Read the stories to get a broader understanding of how terrible Pearson Syndrome is and how tough these kids are. So far, Pearson Syndrome families around the world have joined our fight and raised over $20,000 for The Champ Foundation. We aim to find treatment and a cure for these children. They are all Champs.
June 9: #22for2 Post 9: Website video
After we had launched our website, I spent some time looking at other non-profit sites and realized that a video highlighting William, the research and our goals would be really useful for carrying our message. However, we felt very strongly that all donations to The Champ Foundation are used for research (i.e., not for video production). So, I emailed a few local media companies asking for a favor. DrawBridge Media immediately responded and offered to do our video. They were so professional and had a finished product to us within a few weeks! The video turned out beautifully and is a great addition to our website. You can check out the complete video at thechampfoundation.org.
June 10: #22for2 Post 10: News coverage
We have been very fortunate to gain coverage from local and national news outlets over the past two years. While it is exciting to receive attention from the media, the interviews are always difficult. And to be honest, we often don’t watch the actual news story more than once. It is hard to hear the “statistics” over and over. But, we know these stories bring much needed awareness, and we’d do anything for that! Every time The Champ Foundation’s story airs on TV, we receive donations and well wishes from around the world. We are so grateful for these opportunities.
Here are a few from the past year: Channel 11 Raleigh Durham (Feb. 2016): http://abc11.com/health/durham-baby-has-rare-syndrome/1214800/ WBEN Radio (April 2016): http://media.wben.com/device/mobile/a/114790448/champ-foundation-elizabeth-reynolds.htm and http://media.wben.com/device/mobile/a/114791005/pearson-syndrome-research-dr-suneet-agarwal-md.htm Chanel 4 Buffalo (April 2016): http://wivb.com/2016/04/20/buffalo-benefit-hopes-to-raise-money-for-baby-with-rare-fatal-disorder/ The Doctors (May 2016): http://www.thedoctorstv.com/tags/pearson-syndrome Channel 11 Raleigh Durham (May 2017): http://abc11.com/health/fight-continues-for-durham-toddler-with-rare-syndrome/2001516/
June 11 #22for2 Post 11: #22for2 Campaign Update!
I shouldn’t be surprised, given our incredible #CHAMPSTRONG supporters, but we have already reached our ambitious goal of $6,222. We’ve actually raised $9,626 AND we are only half way through the campaign!
Thank you so much to everyone who has donated, shared, and sent well wishes. It has been fun and emotionally exhausting at the same time, but we are happy this campaign has helped spread awareness and increase our ability to fund researchers working toward treatment and a cure for Pearson Syndrome! All of the money raised during this campaign will go directly to the three projects we are funding. We’ve got some more posts planned! Stay tuned!
June 12: #22for2 Post 12: How does Pearson Syndrome affect William?
William received over 18 red blood transfusions before he was 14 months old. Every month, we would go to Duke Hospital outpatient clinic. The days were so long. We would arrive by 8am. He needed to get a CBC (complete blood count), wait to be typed and screened (apparently babies can change blood type within the first year), wait for the blood to arrive from the blood bank (thanks to anyone who has ever donated), and get premedicated (he had allergic reactions to blood products). He would also need to get an IV, which was the worst part. We struggled monthly with the decision to get a port, especially on the days when nurses had to poke him 3-4 times to find a vein. Finally, we were able to start the transfusion. This took about 3 hours. William either slept, listened to music (Duke Children’s Hospital has music therapy for kids!), or played silly games with dad. This video is from his third to last transfusion, almost exactly a year ago today.
Last September, we showed up for his normal transfusion appointment. But, instead of a hemoglobin of <7, it was over 10.2! It had never stayed that high for an entire month. Happily, he has not received a transfusion since then. We aren’t sure what it means, but we are very, very happy he has outgrown this need.
Since then, William has remained relatively healthy. One thing we monitor all the time is his weight. At one point last summer, he was plateauing and our doctors wanted to do a feeding tube. We were a week away from surgery when a doctor at Cleveland suggested PediaSure and coconut oil. The combination worked! He has steadily increased weight, and is now in the ~17%. Unfortunately, he still barely eats solid foods—after about two bites of anything (including chocolate), he’s “all done.” It’s really hard to imagine that he doesn’t eat—food is so delicious! The number of times that I’ve heard “Have you tried…..” is A LOT. While it might look strange for a 2 year old to be eating out of a bottle, we are grateful it is replacing, or at least delaying, the feeding tube.
To date, our biggest concern is germs/infections. Mitochondria are important energy producers, and are critical to fighting infections. William just doesn’t have that capability. A fever sent us to the hospital for a week, and a cold made him lose a pound in five days. His ANC (Absolute Neutrophil Count—a type of white blood cell) has increased over the last few months, but that doesn’t mean a fever or illness wouldn’t immediately send us to the ER. It is difficult to avoid all germs all the time and we’ve needed to completely adjust our lives to do so. But, it’s the most we can do until there is better treatment for Pearson Syndrome.
June 13 #22for2 Post 13: Dr. Agarwal’s research, Boston Children’s Hospital
As we noted in an earlier post, we started The Champ Foundation after meeting with Dr. Agarwal at Boston Children’s Hospital. Dr. Agarwal and his lab published a paper in 2014 that retrospectively diagnosed several children with Pearson Syndrome; this showed that Pearson Syndrome was being misdiagnosed at an alarming rate. Though Dr. Agarwal's interest in Pearson Syndrome remained, difficultly securing funding for the rare disease meant that his lab needed to focus on other research areas.
Under The Champ Foundation’s grant, his lab's focus has returned to Pearson Syndrome. His approach is to change the percentage of mutant mitochondrial and health mitochondria by targeting and editing mtDNA.
An interesting aspect of Pearson Syndrome is called heteroplasmy, which means that disease causing, deleted mtDNA and healthy mtDNA exist simultaneously. He, like many researchers, suspects heteroplasmy with a higher ratio of deleted to healthy mtDNA might cause more problems. So, shifting heteroplasmy might be an avenue for treatments and a cure.
Dr. Agarwal and his colleagues are investigating the use of mitoTALEN and CRISPR/Cas9 technologies to target mtDNA and deplete the mutant mitochondrial DNA in patients with Pearson Syndrome.
June 14 #22for2 Post 14: Duke Children’s Hospital
After we were told about William’s diagnosis, we would have moved anywhere in the world for him to have the best medical care possible. But, the care we have received at Duke has been outstanding. This was evident with our early interactions with our first doctor. Our pediatric hematologist was/is incredible. She wasted no time performing a bone marrow biopsy (testing for leukemia) and wasted even less time sending out genetic testing (testing for a wide range of things, the worst case being Pearson Syndrome).
We had a diagnosis before William was eight weeks old. While this seemed agonizingly long at the time, we have since learned how complicated mitochondrial disease diagnoses are. Many doctors don’t even know what genetic tests to send out. As I wrote yesterday, it is not uncommon for infants with Pearson Syndrome to be misdiagnosed. We are forever grateful to our hematologist at Duke for digging deeper and finding the real source of William’s medical issues. It has completely altered how we make medical decisions.
For example, we have been able to create an entire team of doctors who we call upon if William ever has an illness or emergency. In addition to a hematologist at Duke, William also sees an endocrinologist, cardiologist, geneticist, GI, dermatologist, and audiologist. We range how often we see them, but we generally visit each doctor every 3-6 months—and have emails and phone numbers for any on-call questions.
We have been so impressed by Duke and know our team is in place if anything changes in the future. We are so grateful for every single doctor (and nurse) who has ever cared for William.
June 15 #22for2 Post 15: Cleveland Clinic, Natural History Study
We enrolled William in a natural history study at the Cleveland Clinic when he was 12 weeks old. A natural history study is an observational study, with the goal of “characterizing the natural history of Pearson Syndrome” and “tracking patients with Pearson Syndrome longitudinally.”
This study does not necessarily aim to find a cure for Pearson Syndrome, but there is a lot of clinical value, and definitely no harm in participating. The biggest benefit is seeing the “experts” on Pearson Syndrome. (We think the “experts” have only seen about 10 cases, ever. But, as much as we love our Duke doctors, only our Duke geneticist had ever HEARD of Pearson Syndrome before William).
We go to Cleveland every six months. The study includes a cardiologist, ophthalmologist, GI, and is lead by a neurologist. William sees all four doctors at every visit. Each doctor has their own tests to monitor all different aspects of his medical development. It’s exhausting, particularly as William is getting older and is more aware of the procedures. Last time he had an echocardiogram, he almost passed out from crying/fighting. But, we are so fortunate to have these baseline results and to have the Cleveland doctors join our Duke doctors to create William’s medical team. We will head back in the beginning of July!
June 16: #22for2 Post 16: Grant proposal process
Last fall, we realized that we needed a structured method to request proposals from researchers and a structured method of evaluating these proposals. So we created a formal Call For Proposals. In the Call For Proposals, we required researchers interested in a grant from The Champ Foundation to submit an introduction letter, a project title, summary, abstract and detailed budget. We also requested the biographical sketch of all collaborating investigators.
Next, we realized that scientists and researchers are not following our Facebook page, so they would have no way of knowing about our funding opportunities. We spent hours creating a mass list (~400) of names, institutions and email addresses for any doctor, PhD, or scientist who had worked in a lab associated with mitochondrial diseases or had ever published anything on mitochondrial diseases. We recognize that this was using a very large hammer for a very small nail, but it seemed to get the job done. By our deadline on March 1, 2017, we had received five promising proposals!
In order to evaluate these proposals, we created a Science Advisory Board. The Champ Foundation’s Science Advisory Board currently includes Dr. Sumit Parikh (neurologist; also the PI on the Natural History Study at the Cleveland Clinic) and Dr. Dwight Koeberl (geneticist at Duke University). They bring different expertise to our Board meetings, and we are grateful for the time they spend working on our projects.
We asked these doctors to rate the projects on multiple criteria (i.e., probability of an advance in cure of mitochondrial deletion disorders in the near term, qualifications of the investigators, innovation and novelty of the project). We then had a conference call we asked them each to provide a Funding Enthusiasm Score (i.e., highly recommend funding, recommend funding, do not recommend funding).
While we had originally been looking to fund one additional project, it became very clear during this process that The Champ Foundation, whose mission is to find a treatment IN THE NEAR TERM, must fund two of these projects. These projects include the work being done at Sheba Medical Center in Israel and the University of Cambridge in England.
Over the next two days, we will be posting more specific information about these two projects. Every dollar we raise ($11,134, so far!!) during the #22for2 campaign will go directly to these projects!
In unrelated news, if you’re wondering if it was easy taking the #22for2 picture with a two year old and two balloons, check out these photos.
June 17: #22for2 Post 17: Sheba Medical Center project
One of the projects we agreed to fund in April is a project at the Sheba Medical Center in Tel Aviv, Israel. The project combines a novel and exciting strategy for treatment with a very talented, cross-disciplinary team of researchers. Two hematologists at Sheba Medical Center, Drs. Amos Toren and Elad Jacoby, have partnered with Dr. Natalie Yivgi Ohana to bring the latter's technology to bear in patients. Basically, the treatment is a high-tech/souped-up bone marrow transplant. The transplanted stem cells would be from the patients’ own stem cells, but the mitochondrial DNA would be from the patients’ mother (did you know that you inherit 100% of your mitochondrial DNA from your mom?). We are supporting important pre-clinical experiments with mice, with the hope that the results support the development and approval of a clinical trial.
Prior to making this commitment, we felt it was important to meet the team face to face, so Jeff traveled to Israel. It was a whirlwind! He spent fewer than 8 hours outside the airport in Tel Aviv after a very long flight. The brief visit was well worth it, though. The facilities, research plan and, most importantly, the team left Jeff with tremendous enthusiasm. We are so excited to follow the progress from Israel!
June 18: #22for2 Post 17: Dr. Minczuk and Dr. Gammage, University of Cambridge
The second project we funded in April is a project at the University of Cambridge in England. Dr. Minczuk and Dr. Gammage are both experts in the field; and the Mitochondrial Biology Unit lab is paving the way to find treatments for mitochondrial diseases. Their approach is closer to what Dr. Agarwal is doing at Boston Children’s Hospital, but they hope to use mtZFN (mitochondrial zinc finger nucleases) to manipulate mtDNA. (Researchers at Boston are using mitoTALEN and CRISPR/Cas9 technologies). The Champ Foundation’s strategy is to give all these experts the necessary funds to use each form of technology to manipulate mitochondrial DNA, hoping that one (or all!) work and moves us closer to a clinical trial. The support from the #22for2 campaign is helping us bring this closer to reality!
June 19: #22for2 Post 19: Joint effort
Since starting The Champ Foundation, Jeff and I have learned a whole new meaning to “time management.” We both work full time and run the foundation full time and have a very-full time toddler. Here’s how it gets done: (hint: it’s mostly because of people like you!)
• Division of labor: Jeff handles almost all of the not-so-fun parts of the foundation (shout out ☺). He deals with banking, taxes, and the IRS. He spent hours working on our by-laws and applied successfully for our determination letter. I generally do more fundraising, keeping the books and taking pictures of William. I also spent a lot of time on the call for proposals and creating the Science Advisory Board. We both work closely with the doctors and researchers, although only Jeff taught himself genetics and biomedicine in about 3 months.
• Teammates: In addition to our outstanding Science Advisory Board, we also have a very talented group who comprise our Board of Directors. @Eliza Malkin, @Cole Arledge, and @Tyler Albright have dedicated hours to fundraising, board phone calls and countless emails. Their knowledge of not-for-profit organizations and business expertise have made them instrumental to our overall success.
• Help with William: Our parents have gone above and beyond to help with William. Jeff’s parents spend significant amounts of time in North Carolina and my parents visit once a month for an entire week. I am confident that if we ever need an afternoon to catch up on Champ foundation stuff, William does not feel neglected. He’s too busy swimming in the pool with Grammy and Grandpa or playing in an airplane with Yaya and Grandpa Terry.
• Fundraising support: There are so many fundraising events that have happened with very minimal effort on either Jeff or my part, and that’s because of some serious #champstrong supporters. The Buffalo Committee organized an event that raised over $70,000. Our siblings and college friends have put on spinning events and have raised over $8,000. My cousins raised over $10,000 at the Virginia Beach Benefit and over $4,000 at a paddle-boarding race in Florida. Friends-of-friends have organized school dress down days and garage sales. The dedication of our friends and family, and generosity of people we have never met, are the real reason we have had so much success and are closer than ever to finding treatment and a cure for Pearson Syndrome.
June 20: #22for2 Post 20: Two days left in campaign
Thank you #champstrong supporters! William has loved reading sweet #22for2 birthday cards! We have two days left in our campaign and have already raised $12,173! These donations are directly funding research working toward a cure for Pearson Syndrome. Thank you so much to everyone who has donated. We could not do this without you!
June 21: #22for2 Post 21: Celebrating William
William is almost two. Over the last two years, Jeff and I have fallen in love with him again and again, every single day. Like most parents, we think he is the smartest, funniest, and kindest baby in the world.
There are so many things that make William happy. He can hear airplanes miles away, is obsessed with books about helicopters, and is learning to say “choo choo” any time he sees a train. He loves our weekly trips to the museum, swimming in pools, going strawberry picking, painting in Nana’s studio, having play dates, watching parades, and taking walks. He likes puzzles, and his attention span reading books somehow outlasts both Jeff’s and mine. We cuddle during the Minions, spend hours swinging on the swing set, and host visitors at Little Rogers Road.
Despite William’s challenges, he has managed to visit a hang gliding competition in Colorado, go for walks in Nantucket, swim in the ocean in Virginia Beach, go sledding in Buffalo, watch Maggie graduate from Cornell, act as a ring bearer in Katharine’s wedding, and fly a single engine plane. We’ve logged hours in the car on road trips up and down the east coast and have visited art museums, science museums, botanical gardens, and zoos.
We have celebrated Valentine’s days with heart shaped pancakes, Thanksgivings with 20+ people at Little Rogers Road, Christmases with matching pajamas, and Halloweens wearing Champ gloves.
While most of these things aren’t particularly different from what other two-year-olds do, we don’t take any of them for granted. We are so grateful for every day we have to do normal things. Tomorrow will be another one of those days and we will celebrate William.
June 22: #22for2 Post 22: Thank you
Our hearts are so full. We had a perfect day celebrating William. We appreciated every text, phone call and message and we think William appreciated his Minion birthday cake.
The #22for2 campaign was more successful than we could have ever imagined. Since we launched the CrowdRise page on 6/1, #ChampStrong supporters have donated over $17,500. These donations are going to be supporting researchers and doctors working toward a cure for Pearson Syndrome.
We enjoyed sharing William's and The Champ Foundation's story, and hope you enjoyed following along. Thank you thank you thank you. https://www.crowdrise.com/22f…/fundraiser/thechampfoundation