When our sweet and beautiful five year old son, Matthew Luis Castillo, was diagnosed with Phelan McDermid Syndrome it was a lot for our family to take in. We were new to this field, so we began to research to try to learn more about this rare genetic disorder.

We knew we needed to raise funds in hopes of one day finding a treatment or cure. We also needed to spread plenty of awareness; we were willing to do whatever it took to make this happen -not only for our son- but for the 2,100 families that share this with us. As a result, in March of 2018 the 1st Annual #TeamMatthewLuis Fundraiser was born! 

For years our family has been going to a wonderful local pub in Miami, Florida, John Martin’s Irish Pub & Restaurant owned by John Clarke and Martin Lynch, . John and Martin, together with event manager, Amapola Ferchl, gave our family the opportunity to host our son’s fundraiser there. Through the process of planning and executing this charitable event, they were nothing but supportive and accommodating. The fundraiser was filled with decorations, personalized centerpieces with pictures of Matthew, balloons, kid activities- including face painting- music, and great food and drinks.

Our son, Matthew, even had his own personalized cocktail menu which included the delicious “Matthew Luis” drink. A percentage of profits from the food and drinks purchased that evening were donated to the Phelan McDermid Syndrome Foundation, #pmsf. Also, with generosity of family and many local businesses, we received over 20 gift baskets; all the proceeds from this prize drawing were donated to #pmsf. More importantly, we were able to speak about our son; we shared our knowledge of the syndrome and the important work of the wonderful Foundation.

After the success of the first year, we decided to have the 2nd Annual #TeamMatthewLuis Fundraiser on March 6, 2019. Due to the overwhelming support and turnout the previous year, John Martin’s opened that evening exclusively for our special event; even the second-floor event space was open to us, and they brought in extra waiters and bartenders. We took last year’s notes and decided this year’s fundraiser would be even bigger and better! Over 200 people attended this year, and we raised just shy of $11,000. We topped last year’s amount and brought in even more support and awareness.

The icing on the cake was having University of Miami-Nova Southeastern University (Center for Autism and Related Disabilities) present at the event. This included Executive Director, Dr. Michael Alessandri, and Jennifer Stella Durocher, Director of UM CARD, and Matthew’s amazing case manager for the last few years. It was also such an honor to have Dr. Alicia Halladay, Chief Science Officer for the Autism Science Foundation, and Dr. Julia Dallman, Lead Investigator for the UM Zebrafish study. Their presence that evening was so important to us; they were able to speak with everyone about how to best support PMS and they discussed the latest findings. We were also so happy to have two local South Florida PMS families, the Durans and the Changs, join us. We wanted to make sure that these fellow families had a chance to share their knowledge and personal experiences with also having a child with PMS. The support was overwhelming! 

Little did we know that it would once again turn into something so large and successful. The amount of help and encouragement from family, friends, teachers, therapists, and even strangers have exceeded our expectations, and we are forever grateful. I will not forget what fellow PMS mom, Cyra Duran, told me: “To walk into a room and view a sea of Phelan Lucky shirts here in Miami made me feel like I was amongst family.”