“Half-Marathon Mom” Shares Inspiration for Running

The Eversource Hartford Marathon is taking place this year on October 10th, and Rhonda Lord will be ready to run. Runners, who have dedicated countless amounts of time and effort, come from all over the United States to race in this event. Some run for the competition, or for the sense of accomplishment and feeling of a job well done, but Rhonda runs for a different reason. Since 2012, Rhonda – a nurse, wife, and mother of five – has been lining up on the Hartford Marathon starting line for her daughter, Piper.

Lori RL PL Dr Sayej (Page 3)Pausing for a photo at a Team Challenge event in July are Piper and her mother, Rhonda Lord (center), flanked by Lori Czajkowski and Wael Sayej, MD,a gastroenterologist at Connecticut Children’s and Piper’s doctor.

BATTLING CROHN’S
Piper, now 11, has severe Crohn’s disease, a chronic inflammatory bowel disease that can affect the entire gastrointestinal (digestive) tract. It is a life-long disease that has no cure. When Piper was first diagnosed, the initial medication dramatically improved her condition.

“We started to have our Piper back,” said Rhonda. However, Piper’s struggle to find a medication that works long term and causes minimal side effects has been a battle for the Lord family.

“Piper has adjusted to it, but it’s rough,” Rhonda says about Piper’s everyday life with Crohn’s. “I don’t know how much pain she’s in. It’s hard for her to be a normal kid.”

“Although there are great medications to treat the disease, the disease is associated with recurrent flares despite treatment, and sometime surgeries are required to manage the disease and its complications,” said Wael Sayej, MD, Piper’s gastroenterologist at Connecticut Children’s Medical Center.

STAYING INFORMED
As a frequent patient in the Division of Digestive Diseases, Hepatology and Nutrition at Connecticut Children’s, Piper is well informed and fully involved in her own care. “It’s good she knows what’s going on and is active in conversations with her doctor,” Rhonda says.

“Piper is a very brave young girl,” said Dr. Sayej, who has known her since diagnosing her condition in 2012. “She always has a positive attitude, even when she is going through the toughest times. She always wants to be informed of the plans and be involved in the decision.”

SUPPORTING THE CAUSE
Rhonda and Piper both attend support groups for Crohn’s and Inflammatory Bowel Disease (IBD). “Someone else has had to struggle and make the same decisions,” Rhonda said. “That’s why reaching out is so important; it helps others to let them know they’re not alone.”

Piper is an Honored Hero of Team Challenge, a fundraising and endurance training program that benefits the Crohn’s and Colitis Foundation of America. Piper speaks in front of audiences at Team Challenge meetings, inspiring the members with her story and relating to others with her condition. “If I can help one person not go through what I had to, it’s worth it,” she says.

Rhonda said she runs the Hartford Marathon as a part of Team Connecticut Children’s because it is something she can do to help to raise awareness about– and ultimately cure – Crohn’s disease.

“I know of at least two or three parents of our patients who are planning on running in the Hartford half or full marathon this year,” said Dr. Sayej, who is an avid runner himself and will be among those participating this year to support and raise money for Connecticut Children’s and the IBD center.

Knowing that Rhonda runs for her, Piper expresses her appreciation. “It feels good — but she doesn’t run it only for me, she runs it for other people too, which makes it even better.”

A Mother’s Intuition: Natalie’s Story

By Lisa M., Natalie’s mom

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On Friday, May 8, our 13-year-old daughter Natalie was on day 2 of a nasty stomach bug. Something was not settling well with me. As a nurse and mom of 4 I couldn’t say exactly what it was but I knew we had to get her to the pediatrician in case she was getting dehydrated.

On our way to the doctor, I diverted to the Connecticut Children’s Medical Center ER. Something came over me and I knew that despite her being able to answer my questions and remaining coherent, she was very ill.

As we entered the ER the staff was amazing. Within minutes, we all realized how critically ill she was. After 2 hours, she was admitted to the PICU and had a central line placed. She received lifesaving medication, including dopamine and epinephrine, for 4 days in the ICU. Quite quickly, we all figured out she had Toxic Shock Syndrome. So rare yet diagnosed almost right away.

Natalie spent 7 days in the hospital and time recuperating at home. We know we almost lost her and we consider her a miracle. The doctors, nurses, child life and everyone else were simply amazing. I have not one negative word to say about our hospital stay.

Although you never want to be the parent that almost loses a child, I believe we were graced with an experience that will forever change us. I will be a better nurse, a better mom and a better person having faced a parent’s worse nightmare.

We are forever grateful to your staff and your team. You have all become a part of our hearts forever and we will definitely pay it forward as Natalie recuperates. THANK YOU!!!