Advocacy Story: Because Everyone Deserves Dignity.
Chrissy & Alaina speaking at the ground breaking for 1st rest stop in TN by Chrissy Hood When a family
The families who have children diagnosed with Phelan-McDermid syndrome (PMS) have more in common than just having a child with a disability. The families of those affected by the syndrome have their own special needs; the need to have the emotional support of other families that are also going through the unique challenges that a rare disease poses every day. The closest connection isn’t at our child’s school, or on the next block, it could be hundreds, sometimes thousands of miles away. Despite this isolation, our PMS community has been able to form a close-knit family.
Below are candid stories of people affected by PMS and how they struggle, cope, love, hope and carry on. The Phelan-McDermid Syndrome Foundation (PMSF) wishes to extend its most heartfelt thanks to all those who opened up their lives and graciously shared their most private moments.
Chrissy & Alaina speaking at the ground breaking for 1st rest stop in TN by Chrissy Hood When a family
Welcome to the “First 100 Days of your membership with the Phelan-McDermid Syndrome Foundation.
We started the “First 100 Days” program a year ago and have had 100 US families join our membership in that time. We are so happy to be able to provide our new families with this intensive, personal, and differentiated support.
Hi, I’m Bill Kress. I turned 41 in February and in the same month received a diagnosis of Phelan-McDermid Syndrome
Katherine Ellis shares her thoughts on how growing up with Andrew, her brother with Phelan-McDermid syndrome, has changed their family
The Phelan McDermid Syndrome Foundation and Cecilia’s family are delighted to share a part of their family story. Cecilia was
The parents of a child diagnosed with Phelan-McDermid syndrome share their experience with diagnosis, raising awareness and fundraising with “Logan’s
Nothing can prepare you for your child’s diagnosis. It doesn’t matter their age or if you saw it coming. It’s
I live in Lizzy’s World. It is not quite the same world everyone else lives in. My world revolves around
As told by her mother, Bonnie Fly. How do you tell the story of someone who has no words? As
We lived in Vienna and Madrid, a bit in London and Zurich, a few months in Milan. We thought we
I just turned 45 this year and up until now I have been the oldest known case with Phelan-McDermid Syndrome.
I can’t be angry at you. I can’t be angry at you because you don’t know any better. You are
Our Princess This is the story of our daughter who is 22 years old. Her name is Emilie and she
Kyle Thorson was born in Salt Lake City Utah on the 9th day of the 9th month in 1993. When
Our “Kit Man!” My PMS story starts in March, 1993, when my son Kit was 15 months old. Kit was
Anneli’s first cry came 8 weeks too early. We were ready to leave for our last holidays on our own
Brave and Beautiful Bella is four years old. She loves music, finger plays, and the book Chicka Chicka Boom Boom
It was an otherwise normal workday in mid-October of 2012 when my cell phone vibrated on the desk. I had
So Many Questions. How can I explain all this life in only one page??? I could write a book… Anyway,
Olivia is an 8 year old, fun-loving and happy little girl residing in central New Jersey with her mom Taryn,
When thinking about writing this, as Jack’s Mother, I was in a dilemma. Should I, would I, or mostly…could I?
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