Well, it’s been another long day for Sean, and it’s about to be yet another long week in the story of Sean’s medical care.

Hi, I’m Sierra, Sean’s mom, and for the majority of his life (13 years), I’ve also been his medical advocate. Today has begun another chapter in Sean’s extremely rare, unique, and complex medical life, and we need your help to see us through it!

Today, Sean was admitted to Boston Children’s with a badly infected ulcer on his leg. The wound is a symptom of one of his very unique conditions, Pyoderma Gangrenosum (PG), which rarely affects children. This is the second time we’ve needed to be hospitalized for this same wound as it simply will not heal… and the doctors just told me he is showing signs of two new ulcers on his other leg!

Simply put, we need your help! My husband has been unemployed for the past four months and our funds have run extremely low. The good news is he recently was hired by a local company (yay), but he hasn’t started yet, and this trip to the hospital was very unexpected... and it will be expensive. We’ll likely be here for 10 days or more while Sean’s ulcer is treated, but the hospital won’t cover food for the family, and due to COVID-19 only one parent can stay with him at a time so my husband would need to drive over two hours to see us, and we simply don’t have the gas money for him to be with us during the day. If there is any way you could help us with funding for food, gas, and the simple wound care supplies (gloves, bandages, ointment, etc.) he will likely need upon release, we would be eternally grateful!

Sean is a beautiful soul who has had to put up with more medical procedures and diagnoses in his short 13 years than anyone should have to. Yet, he takes each hospital stay, surgery, needle poke, and doctor’s visit in stride. Because he hasn’t had the opportunity to know any different.

If you’re still here with me reading our story, I’d love to tell you a little more about Sean:

Sean was born with an ultra-rare triplication defect on his first chromosome – as far as we know he’s literally the only one in the world with this triplication. At four years old, he was diagnosed with this condition and many underlying comorbidities including an atrial septal defect, deformed ear drums (hard of hearing), chronic ear and sinus infections, and global developmental delays. At the time, his health was so fragile we were told to expect the worst.

Once doctors were able to address many of his comorbidities, Sean’s health stabilized for a few years, but the fact that his condition is so rare means that we never know what’s coming next. He is still hearing impaired, hearing with the help of listening devices, his heart is still monitored regularly, his developmental delays continue, and he remains incontinent, to this day.

At the age of 10 his medical “stability” evaporated overnight when he was diagnosed with another one-in-a-million diagnosis, Chronic Recurrent Multifocal Osteomyelitis (CRMO). That was an incredibly scary time, as the first diagnosis of the legions CRMO leaves on your bones was cancer. And while CRMO isn’t quite the shock cancer is when you hear it, its incurable nature, and the chronic pain it leaves my son in are absolutely horrifying. Since the summer of 2017, Sean has had to undergo monthly infusions of biologics in order to keep his flairs with CRMO in check. Most of the time Sean is still in so much pain he finds it hard to walk from his bedroom to the living room or bathroom.

And just last year came the diagnosis of PG, which the doctors suspect is a comorbidity of CRMO; and is the reason we’re being admitted to Boston Children’s today. We will need to remain in the ER overnight as we wait for a bed in a hospital overrun with patients in the time of COVID-19.

Yet, Sean’s still a happy and loving 13-year-old kid; he loves video games (Minecraft), cooking, sharks, music (his favorite band is Imagine Dragons), reading (current favorites include Magic Tree House and Gravity Falls), and playing with his friends when he feels up to it! We’re a lucky family. We love each other and have thankfully had access to the doctors and medical care that can give Sean his best quality of life.

But, this time; this hospital stay; we need your help to get through it! COVID-19 and those underlying factors that go with it have stripped us of our resources and our ability to plan for the unforeseen; in order to keep a roof over our heads and food on the table. Sean is severely immunocompromised; with the immune system of a pediatric cancer patient, so we have had to be extra cautious through the pandemic and have sacrificed seeing family and friends, in person school, other opportunities, and our financial health to ensure Sean’s safety. And now we’re really struggling.

Would you be able to help us through this week? Every little bit helps and truly means the world to us.

Thank you!