When Mason was born we knew something was wrong, he had what the hospital called a seizure and was lethargic. He was in the neonatal unit of the hospital for 2 weeks. They ran many tests on him, and we were told by the hospital director that he had no idea what had happened or what the cause was. At that point they did not do genetic tests because his APGAR scores were normal.
I had Mason begin early intervention at 3 months because he presented significant delays. As an infant, we woke him up to feed him because he was never hungry and was extremely floppy. We took him to a pediatric neurologist and I directly asked both him and his pediatrician if they thought he had PWS. They both agreed that he didn’t based on his symptoms, but I questioned it because when you enter floppy baby as a symptom online, PWS is listed as a possible cause.
At 21 months I had Mason genetically tested, his pediatrician told me it was a waste of time because if it was a genetic condition nothing could be done about it. We were shocked at the diagnosis, and I will never forget being in the geneticists office. My husband asked if he would be able to play sports and she said “he’s probably going to have to live in a group home”, she gave us a brochure on PWS that looked like it was written in the 70’s and told us to book a follow up appointment in a year. We never saw her again.
What struggles have you had along the way?
Mason has been a tenacious, sweet and loving boy. I remember after he was diagnosed my husband and I said we would give anything to take that diagnosis away. Six years later I can honestly say that I wouldn’t change anything about Mason, including his diagnosis. Does he exhibit extremely difficult behaviors at times? Certainly! Is it a challenge to constantly monitor his appetite and diet?Most definitely! However the reward of having such a beautiful human being for a son far outweighs any struggles we have had. He has made me a better parent and definitely a better person.
The biggest challenge I feel we encountered was the stress of losing our health insurance 2 years ago. My husband switched jobs and I am self employed with no access to private insurance. To maintain the insurance we had was more than my mortgage payment, but I was afraid that we wouldn’t qualify for anything else because of Mason’s preexisting condition. Fortunately, we live in Massachusetts which has offered state insurance for years. The relief in knowing that Mason’s medication will continue to be covered and we can never be denied coverage is immeasurable.
How did you meet President Obama?
We were asked to attend an event in Boston for the Affordable Health Care Act. Below is a link to an article the Boston Globe wrote about the event. The Health Connector which is Massachusetts computer portal for health insurance gave our names to the governor’s office as a success story for affordable healthcare in Massachusetts.
The President was wonderful to Mason. He bent down and held his hands and asked his name. I was so nervous that Mason wouldn’t speak. Sometimes, because of his speech delay he is silent because he is afraid the person will not understand him. He did respond, and the President asked his age and grade in school and what he wanted to be he grew up. He did tell the President he wanted to be a pro wrestler, that part in the Globe article was incorrect.
Mason meeting President Obama
I was thrilled because I had the opportunity to tell the President that the fight for affordable healthcare is worth it, and we wouldn’t have insurance if he didn’t eliminate pre-existing condition discrimination and thank you. As a hair stylist I meet people of many different political backgrounds, I know a lot of people are opposed to healthcare reform. Regardless of political beliefs, ensuring that children AND adults with pre existing conditions can never be denied healthcare is such important legislature. The opportunity to express that publicly and the thrill for Mason to meet the President of the United States was amazing.
How has Prader-Willi Syndrome Association helped?
When Mason was diagnosed with PWS, having access to PWSA was a Godsend. They spent hours talking to my husband and I about the reality of what to expect. We were referred to Dr. Angulo, and were offered hope, he was the first doctor who really understood PWS. I was referred to a parent who spoke to me about her daughter. This was wonderful because I could see that while the diagnosis would be challenging, Mason would be able to do many things that a typical child can do. He does, he plays piano, does karate, swimming lessons and horseback riding. Even now the support we have received through PWSA is immeasurable. When Mason began having behavior difficulty last year at school, Evan Farrar helped with resources and information that have been invaluable. Even today, he wrote a letter to Mason’s school to help get additional support in his classroom, which happened. I cannot begin to express my appreciation to PWSA for the support and genuine concern for the PWS community!
-Laura Ferreira, mother of Mason (age 8 with PWS)