Zara’s Story

A Family’s Journey Through Cutaneous Mastocytosis

Our family was overjoyed when Zara joined us on November 3, 2023 as our surprise “IUD baby”, completing our family of 6.   She brought so much love and light into our lives, but by the time she was three months old, our journey took an unexpected turn.

We noticed a small lesion on Zara’s belly and took her to the doctor immediately. At first, they thought it was impetigo, but her condition continued to worsen despite treatment. As lesions resembling burn blisters began spreading across her body, we were desperate for answers. Eventually, a dermatologist performed a skin biopsy, and after an agonizing two-week wait, we received a diagnosis: cutaneous mastocytosis.

It was a term we had never heard before, and learning about the condition was overwhelming. Zara’s doctor provided some guidance, including foods and medications to avoid, an EpiPen prescription, and a hopeful prognosis that she might outgrow it by puberty. We were also directed to MastoKids, which became a lifeline for us. Connecting with other parents who understood our struggles gave us emotional support and practical advice during those early days.

Despite our best efforts, Zara’s condition worsened. Holding her became painful because her blisters would break and leak fluid. Determined to find better care, we sought out specialists and found Amanda Michaud, DMSc, PA-C, AE-C, at Family Allergy & Asthma Consultants. Amanda’s expertise and compassion gave us hope during an otherwise dark time.

Things took a turn for the worse when Zara caught a virus, triggering a severe flare that led to hospitalization. It was one of the scariest moments of our lives. We quickly realized how little many medical professionals knew about mastocytosis, and this inspired us to become fierce advocates for Zara.

Today, Zara is thriving, though we know this road will still have its challenges. We’ve learned to stay vigilant, educate ourselves, and advocate for her every step of the way. Our family’s faith and the incredible support from communities like MastoKids have been our anchors.

 My Advice for Other Parents

• Advocate for your child: Don’t hesitate to ask questions, seek second opinions, and fight for the care your child deserves.

• Collaborate with your providers: Be honest with your medical providers and encourage them to reach out to each other, as we are all a team cheering for the patient’s improvement

• Educate yourself and others: The more you know, the better equipped you’ll be to manage this journey and help those around you understand.

• Find your community: Joining groups like MastoKids and TMS can provide invaluable emotional support and guidance.