By Melissa Moore-Randall
Every parent’s worst fear is being told their child is sick. In the case of Rya Goodwin, the news that she was suffering from Costello Syndrome was devastating to her family. This began the journey of brave and beautiful Rya.
“Rya was born via Cesarean section at 38 weeks because her heart rate was dangerously high. She was not breathing at birth and was immediately taken to the NICU at Mass General where she spent the next 37 days undergoing numerous tests, scans, medication trials, and interventions before ultimately coming home with a feeding tube and two different medications to help her heart function correctly. We pushed for genetic testing to be done because we knew this was not a fluke thing,” said mom Amanda, a Revere teacher at the Hill School in a grade 3-5 Substantially Separate classroom.
On April 21, 2023, my husband, Justin and I got a diagnosis of Costello Syndrome. We were told Rya would never live alone, she would be in life skills classes, she would never get married or have children of her own, she will undergo many surgeries, therapies, and cancer screenings because she is predisposed to cancer especially in the first 10 years of life, and the personality of someone with Costello syndrome is pure happiness. We on the other hand felt everything but happiness after this news. Our world was shattered. We got all of this information while she was 8 months old. So we were standing in the office feeling like we had to start mourning her life before she even turned one.”
Rya is one of only 300 cases of Costello Syndrome worldwide. Costello syndrome affects the body in numerous ways and can lead to developmental delays, heart defects, tumors, feeding and growth difficulties, coarse facial features, and more. Individuals with Costello syndrome also have a lifetime risk for malignant tumors including rhabdomyosarcoma and neuroblastoma in young children and transitional cell carcinoma of the bladder in adolescents and young adults.
Her diagnosis also began the journey of her young family. Rya’s parents married in 2018. They welcomed their first child, a son Ronan in 2019. “Ronan is 4 years old and the absolute best big brother to Rya. He is her favorite person, down to having to FaceTime with him when she comes out of anesthesia because she responds so well to his voice. He showers her with love and praise every single day. “Mama she’s getting teeth! Good job Rya! I’m so proud of you!”
According to Amanda, the future is scary. “The future is scary for us. I am not going to lie. She had tethered spinal cord surgery in September which was the second surgery she has had in her 16 months of life with another one scheduled soon. Rya currently has early intervention, physical therapy, occupational therapy, speech therapy, feeding therapy, and music therapy every week (sometimes twice a week if we are lucky to get an appointment). She has a team of 31 doctors at Massachusetts General Hospital. In addition, she is also seen by a teacher from Perkins School for the Blind because she suffers from Nystagmus (dancing eyes). She has cancer screenings every 3 months because of how fast her cells divide even when mutated or damaged. Her life truly depends on every single appointment, there is no room for rescheduling or postponing.”
“I am eternally grateful for Jackie Singer and her amazing ability to bring a community together. I honestly do not think I could go to work every day if I was anywhere else but the Hill school. I am constantly reminded how kind people are and that has saved my life this past year. Lastly, January 27 is Costello Syndrome Awareness Day so please keep Rya and any child like her in your thoughts and prayers and wear these shirts loud and proud so no one feels like they are fighting alone. We are extremely fortunate to be surrounded by so many family and friends who have rallied behind us during such a difficult time. We could not do this without the support of each and every one of them.” When asked what people could do to help Rya, her mom simply replied, “Please just be kind to people. When someone cuts you off in traffic try to pause before reacting. You never know if that person just left an appointment that changed the entire course of their lives. Everyone has things in their life that they are dealing with, just be compassionate as often as possible.”
