My hero-my daughter, speaks at medical retreat in Seattle

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Story And Photo By Torrey Anderson
Thursday, December 1, 2022
Raye Anderson was a special guest speaker at a medical retreat in Seattle, WA in early November.

Raye Anderson was a special guest speaker at a medical retreat in Seattle, WA in early November.

My daughter Raye is on the top of the list of my personal heroes. That word, hero, can describe many different traits that people find admirable or inspiring, but those terms do not even begin to describe my feelings for this child.

Raye, a Laurel Middle School Student, was a special guest speaker at a medical retreat in Seattle, WA early in November. At their 8th Annual Vascular Anomalies Retreat, a panel of doctors and specialists met to discuss treatment of rare disorders at Seattle Children’s Hospital. Raye was invited to share some thoughts on her personal experience as a child who has been diagnosed with a genetic condition known as P13K. One of the main symptoms of this condition is overgrowth of tissue in her face and neck. These overgrowths are known as Cystic Hygromas, and according to an article found at my.clevelandclinic.org, they account for “only 6% of all non-cancerous (benign) tumors during early childhood.” These tumor-like growths present as a large bulge under the skin, and can cause a myriad of related health problems, including obstructed airways and a compromised immune system.

Raye’s mom and I went in for a pregnancy check-up early in 2003. Everything was relatively normal, until it came time for the ultrasound. As the technician zeroed in on our unborn child, we were disturbed when they suddenly moved the screen out of our view. The technician was obviously trying to prevent us from seeing something.

We were referred to a specialist, who explained that our unborn child had developed this Cystic Hygroma thing that we had never heard of. They couldn’t tell us much else, except that there was a chance that the baby could possibly develop Fetal Hydrops, a condition where an unborn baby’s organs absorb an abnormal amount of fluid. Fetal Hydrops is fatal in about half of the fetuses that develop the condition. The doctor recommended that we terminate the pregnancy immediately.

We decided that we were going to allow the pregnancy to continue. There were several factors that influenced this decision. I am just going to leave it at that. A few months after this terrifying news, Raye’s mom went into premature labor. We were flown to Denver, CO. on a Help Flight, and our child was delivered via emergency C-Section on Sept. 21, 2008. There was a large mass extending from her lower jaw to a point slightly below her collar bone. I turned to her mom and said, “She’s beautiful,” because she was. She was miraculous. She let out a scream that shook our universe to its very core, but it quickly became apparent that things were serious when that scream turned into the sound of someone trying to cry underwater. Raye’s airway was obstructed by cysts, and she was struggling to breathe. She was intubated, and the first time we had heard her voice became the last for several years.

Raye spent the first 3 years of her life in an intensive care unit in two different hospitals. Shortly after her birth in Denver, her mom was looking for other treatment options because doctors in Denver, despite their very best efforts, were unable to make headway with Raye’s treatment. My child endured surgery after surgery, only to have the cysts come back. In that time, doctors were forced to perform a tracheotomy and install a feeding tube in her stomach, as Raye was unable to use her mouth to eat. Raye’s mom eventually made contact with Dr. Jonathan Perkins at Seattle Children’s Hospital. Less than eight hours later, my daughter and her mom were on a flight to Seattle.

In the last 13 years, Dr. Perkins’ research has led to new treatment options for people who struggle with vascular anomalies. It was discovered that a medication designed to treat breast cancer patients had an unplanned effect of reducing tissue overgrowth in patients who carry the P13K gene. Last year, the FDA approved the medication for treatment of P13K related vascular anomalies. Raye’s medical records and experiences were a big part of that approval.

Today, Raye is a typical teenager. She is smarter than her dad, of course, and we have our typical teenager-parent dynamic. I know that she is stronger than me, and could probably take me in a contest of wills. On her last trip to Seattle, Dr. Perkins finally removed her tracheotomy.

The feeding tube was removed at the appointment prior to the most recent one. Her last trip was both a precursor to new beginnings and an opportunity to help the medical community see the results of years of research that has gone in to helping both patients and doctors understand

this difficult condition. Dr. Perkins invited her to speak at the 8th Annual Vascular Anomalies Retreat. “I was both nervous and excited,” says Raye, but her constant drive to advocate for others by sharing her story pushed her forward.

“The first month of using Alpelisib (the medication) I could feel my jaw, which was amazing,” said Raye in her address to the panel. Over the course of her treatment, everyone in our family has been amazed with the results. Her face is becoming more symmetrical, and she now has a prominent jawline, a feature that was completely obscured by cysts since her birth. She went on to say, “It has helped me to do the things I love most.” Raye is a social butterfly, but her condition is often met with stares and apprehension. During the presentation, facilitators asked her what she would want people with her condition to know.

“You are not alone. You have everyone here (motioning to Dr. Perkins and the medical team).

Even me, who has been through so much stuff to get here. There are so many people who care about you. If anyone ever says anything mean to you, its either people who just don’t know what you are going through, are too afraid to ask questions, or its people who just judge based on what your face looks like,” says Raye. “You got this!”

Words to live by whether you have a medical condition or not. I want to acknowledge all of the people in my family and in the Laurel community who have rallied around Raye through the years. If you see us out and about, don’t be afraid to say hello. Raye loves everyone she meets, and she usually leaves people feeling that love. Lets spread it around.

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