A McAllen family is keeping their son’s memory alive on Instagram to honor him and raise awareness of Prader-Willi Syndrome.
Perry Yap, 23, lived with Prader-Willi Syndrome (PWS) his entire life and left an indelible mark on those who loved him.
His older sister, Maristil Yap, started the Instagram account in 2017 to document Perry’s journey with the genetic disorder and has continued to keep the page active to reminisce about her brother and spread awareness for others with his condition, especially during May which is PWS Awareness Month.
“Not a lot of people, especially in the Valley, know about Prader-Willi Syndrome, and so I kinda wanted to raise awareness and educate a little bit as well, just so that people can understand,” Maristil said.
The genetic disorder is usually caused by the deletion of a part of chromosome 15 and can cause behavioral and intellectual problems, short stature and a constant hunger that can lead to obesity.
Maristil strongly believes that having a support system and finding other families who are experiencing the same things can help alleviate the challenges of this syndrome.
The syndrome presented itself in her brother almost immediately after his birth. He began to gain abnormal weight, and as he became older, the family discovered that he was unable to acquire speech, his sister said.
After multiple doctor visits in the Philippines, where the Yap family is originally from, Perry was diagnosed with PWS at age 3.
“We didn’t really know how to approach it because he was the first person that was diagnosed in the Philippines,” his sister said.
Tita Yap, Perry’s mother, said the family decided to migrate to the U.S. in 2005 when Perry needed a high-risk surgery that could not be performed by the doctors in the Philippines.
Perry’s parents wanted the best health care for him and sacrificed their old life for his well being, she said.
Despite his condition, Perry’s mother enrolled him in the activities that he enjoyed because she felt that she needed to take advantage of those opportunities for him.
“In America everything is provided, why not take the opportunity,” Tita said. “I want to tell parents to develop the talents of their children because you don’t know when they will pass away. Make each moment special with them to make memories every day, every minute, every second.”
She said the hardest part about living with Prader-Willi Syndrome for Perry was not being able to physically participate in the activities he enjoyed.
“He had a lot of physical limitations, like his weight would fluctuate every year and so one year he could run, he could do sports,” Maristil said. “Like he could play basketball and participate in the special olympics and then the next year, he would be in the hospital. So that was very hard for him because Perry was a very active person.”
She said her brother looked forward to the McAllen Special Olympics every year and loved going outdoors to play sports, including basketball, tennis, swimming and archery.
“The last few years he had just basically been at home and it was very hard for him because he’s a very social kid,” Maristil said. “He wanted to always go outside and talk to people and so I feel like that restricted him so much.”
At Perry’s wake, the family raised funds to donate to the McAllen Special Olympics program to honor his love for the event.
Aside from his knack for sports, Perry also enjoyed the arts. His mother said he loved to paint and play the piano, something she said he was naturally gifted in.
Maristil said her favorite thing about her brother was his spirit and his ability to be kind even when others weren’t so kind to him.
“He didn’t care about where you came from, who you (were) or like, what you (did),” Maristil said. “He always saw the good in everyone and he just genuinely gave his love regardless of how people dealt with that, and that’s what I admire about him the most.”
She said her message to those who have a family member with PWS is “to take advantage of the time that they have with their loved one because with this condition you don’t really know until when you’ll be with them. So take advantage of the time that you have with them and give them all the love that you can.”
Maristil said she believes everyone should become educated about the condition.
“These children are very special and they deserve all the love that we can give to them because they are a gift from God and we should treat them like how we treat everyone else,” she said.
To donate to the research of PWS visit fpwr.org. For the month of May the organization will be matching donations of up to $100,00.
For those who may have a loved one with PWS and are looking for local services visit the Texas Prader Willi Association.
