Support Sirus in His Battle Against Rare Disease

Hi, my name is Kara North and I’m hoping to raise money to help my dear friends and their sweet 5 month old boy who is suddenly fighting a rare and serious autoimmune disease called Diffuse Cutaneous Mastocytosis.

Felicia Biscardi and Brian Damark, along with big sister Willow, welcomed Sirus on December 15, 2023. He was your typical happy, healthy baby until around 3 months old when he started to break out in horrible blisters all over his head and neck, quickly spreading throughout his whole body.

Here’s a little note from Sirius’ mom, Felicia, about what they’ve been going through the past couple of months:

It all started on March 20th when he woke up with a bad patch of blisters on his head. After several trips to the ER, we were continually told it was Impetigo…..after medications didn’t work we knew it wasn’t the right diagnosis. When Sirus had an extremely bad flare up on April 12 we went back to the ER and then transferred to Maria Fareri Children’s Hospital in West Chester. There, our poor boy was put through the wringer to find the right diagnosis. After skin biopsies were done, it was confirmed he had a very rare skin disease called Diffuse Cutaneous Mastocytosis. Put simply, his body overproduced Mast Cells in his skin and when triggered, the release of antihistamines go crazy, which causes severe hives which then turn into severe blisters. The triggers can be as simple as a scratch on his skin, excessive heat or friction, emotional distress and even certain medications. He’s also at an extremely high risk of anaphylaxis. Our poor boy can barely sleep as he’s itching all night and day, he can’t stay in one position for more than an hour, we can barely take him outside to enjoy nature.

Since April 12, he’s been hospitalized two more times. This past Thursday was the most severe flare up he’s had and again hospitalized for 5 days.

We only have one income, as I cannot get a job. Sirus needs around the clock care and there’s no way we can hold another person responsible for such a sensitive and serious condition.

We are struggling. We are hurting. We are emotionally and physically overwhelmed beyond recognition.

We now have to go to Brigham & Women’s Mastocytosis center in Massachusetts for further Dr visits and hopefully a better treatment plan. If anyone would be able to donate and help support our sweet baby boy, we would be eternally grateful.

As you can see, this condition is unfortunately extremely difficult to manage as there is no real treatment, only symptom management as the flare up’s happen. The blisters and lesions are incredibly uncomfortable for Sirus, and if severe enough can lead to anaphylaxis. They are working hard to keep him healthy and happy, but every day is a new battle trying to keep his skin

This week, Sirus just came home from his 3rd hospital stay. On June 11th, they are heading to Boston to meet with a team of specialists who can hopefully help find some answers about Sirus’ condition and how to treat it. But this journey is an expensive one, and as many families who deal with medical emergencies know, the bills are piling up with no end in sight. Felicia, Brian, Willow and Sirus could really use our help fighting this battle. We know it takes a village and we’re hoping to bring ours together to help this sweet little boy.

Any donation is greatly appreciated and will make a huge difference in Sirus’ fight. Funds will help to cover existing emergency room bills, ambulance cost, and continued care for Sirus. Since his condition requires around the clock care, Felicia is no longer able to work, which of course has taken a big financial toll on their family. Brian has also had to cut down hours to care for their 6 year old daughter, Willow. Your kindness, support and generosity mean more than we could put into words. Thank you!

We look forward to posting some positive updates on Sirus in the coming weeks.