Dear Family & Friends,

October is a special month for our family. We were incredibly grateful to celebrate Natalie’s 18th birthday on October 2nd — 18, can you believe it?! And just yesterday, we marked Phelan McDermid Syndrome Awareness Day (October 22^nd), a cause that’s deeply personal to us.

As many of you know, Natalie was born with Phelan McDermid Syndrome (PMS), a rare genetic condition caused by a small deletion on chromosome 22, specifically in the SHANK3 region. While it’s taken time to understand the science behind it, what we’ve always known is how much love, support, and care Natalie needs — and deserves.

Children with PMS face a wide range of medical challenges. Many live with seizures, feeding and digestive issues, and neuropsychiatric illnesses — all of which can be life-threatening. For Natalie, the most difficult battles have been with neuropsychiatric symptoms. Two years ago, she was hospitalized for 10 days during her first episode of catatonia and depression. It was a long, painful year, but she came through it with incredible strength.

Earlier this year, however, she became ill again. This time, she’s been facing a complex mix of catatonia, bipolar symptoms, and schizophrenia-like episodes. Treatments that work for others often don’t work for children with PMS. We’ve been navigating a maze of trial and error — and leaning heavily on hope, faith, and the support of others.

One of our greatest sources of support has been the Phelan McDermid Syndrome Foundation (PMSF). I honestly don’t know where we’d be without them. They’ve provided critical guidance to Natalie’s medical team — guidance that may very well have saved her life.

PMSF supports families like ours through:

• Groundbreaking research
• Medical consultations
• Family support programs
• A biannual conference that brings our community together

This past year, they’ve made incredible strides:

• They launched the first FDA-approved clinical trials for a potential cure.
• They awarded a $100,000 annual research grant focused on neuropsychiatric illness in PMS.

Here’s the hard truth: 90% of PMSF’s funding comes from donors. And with federal funding being paused or cut, they’re relying more than ever on families and friends to help sustain this vital work.

I’ve never asked for donations on Natalie’s behalf before. But this year, I can’t stay quiet. We’re launching our first annual fundraising campaign, and we’d be so grateful if you’d consider donating $22 over the next 22 days, in honor of Natalie and the 22nd chromosome that holds the key to this condition.

Your love, support, and prayers mean the world to us!

With deep gratitude,
The Sheehan Family
(Regina, Patrick, Natalie & Ava)