Our story began on September 13th, 2013 when our beautiful baby boy, Graham Michael Pierce, was born into the world. He was perfect and we were so excited to welcome him into our family. We noticed right away that Graham slept a lot and was not interested in eating and, whatever he did eat, he would often vomit up. As a result, his weight began to suffer and he was diagnosed with failure to thrive. Very early on, we started seeing specialists at Boston Children's Hospital to investigate. It turned out Graham had severe acid reflux, which contributed to the constant vomiting, as well as laryngomalacia, which affected his breathing. He was only able to eat using a hypoallergenic formula, which was still a struggle for him keep down, and was put on the highest allowable dosage of Omeprazole to help manage his reflux. As time went on, we began to notice that Graham was delayed in hitting key milestones such as sitting up and crawling but everyone attributed these delays to his slow weight gain and we all hoped things would catch up with time. On his 1st birthday we threw a big party for him and noted with concern when he cried hysterically as everyone sang "Happy Birthday" to him. As time went, on our concerns grew, and we engaged with Early Intervention to provide services for Graham when he was 15 months old. In the months following, the team of therapists and specialists worked wonders with him and really helped him crawl and walk with the use of orthotics in his shoes. In the meantime, we announced we were expecting a second baby in June 2015.
As Graham physically came up to speed we noticed that the speech and communication skills were not advancing. He had a said a couple of words like "ball" and "whoa" but then stopped. Speech therapy started and we made an appointment to see the Developmental Medicine Team at Children's Hospital.
On June 6, 2015 we welcomed our second son, Reid Francis Pierce, to the world. He was the complete opposite baby of Graham where he was alert and loved to eat. Shortly after, in July, Graham was diagnosed with autism spectrum disorder, given his delays in development. We began receiving 20 hours of ABA (Applied Behavorial Anlaysis) therapy at our home. The expanding Pierce team of therapists and specialists have been great and have helped teach Graham an array of sign language and how to use PECS (Picture Exchange Communication System) as a communication vehicle.
We felt there was more reasons contributing to Graham's delays than autism so we went to see neurology at Children's Hospital to have some additional genetic testing done on Graham. We felt this was just a precautionary measure simply to rule out a bunch of possibilities but on Monday November 30th, 2015 we received the call that Graham had tested positive for Fragile X Syndrome which is the most common inherited cause of intellectual disabilities and intellectual impairment. Fragile X is caused by a single gene in the DNA not producing a protein crucial for neurological development and brain function. There is currently no cure for Fragile X.
As we began to grieve and cope with Graham's diagnosis we knew we had to worry about our sweet Reid who was only 6 months old at the time as this was a genetic condition. We hoped and prayed that Reid would be okay given that he was so different from Graham as a baby and seemed to be hitting his milestones. However, on Monday January 4th, 2016, Reid was also diagnosed with Fragile X Syndrome. To have both of our beautiful boys diagnosed with such a serious and life altering condition literally brought us to our knees. The news was devastating to our family. It's a feeling we cannot even describe. As anyone could imagine our world was turned upside down. As parents our minds raced with the contemplation of what the future holds for our boys without a cure. Will they be able to go to school and make friends? Will they attend college? Will they be able to have a job? Will they be able to drive a car? Will they be able to live independently? Who will care for them when we are gone? The answer to these questions and countless others is that we do not know but what we do know is that we need your help to ensure that we can make an impact in their lives and others by funding dedicated research and creating awareness for others.
There is a great deal of research and clinical trials that are underway but all have expressed the need for more funding. In order to support these efforts, we have formed The Pierce Family Fragile X Foundation, Inc. Our non-profit charity organization has the sole purpose of raising money to find a cure. Through our fundraising efforts, we also hope to raise awareness.
Our family, on our own, may not be able to cure Fragile X, but we can leverage our skills to help raise money to fund this vital research for those that can.
We know one thing for sure. Our goals for Graham and Reid have not changed: ensure they are happy, well-loved and have purpose. They have the ability to love and receive love; to have joy and bring us joy. And, at its core, we think that is what life is all about. That is what keeps us going each day.
Please consider making a donation to our charity today. It takes a village to find a cure.
Wishing for a bright future,
The Pierce Family
Michael, Kathan, Graham, Reid and our pup Ruby