How our children’s rare conditions created our special bond

Twenty years ago, Brad McNamara and Joel Klein became roommates at Northeastern University. Little did they know that years later their friendship would become a vital source of support for themselves and their families, connected by the bond of parenting a child with a rare condition.

The families’ medical odyssey began in 2014, when Joel and his wife, Kayla, learned their son, Robbie, had severe hemophilia A just weeks into Kayla’s pregnancy. Hemophilia A is a bleeding disorder in which the blood doesn’t clot normally. Brad and his wife, Maura, were a constant source of support for the couple, especially during emotionally challenging times when Robbie needed surgery or was in the hospital.

Then, in late 2018, Maura and Brad’s 2-year-old daughter, Ellery, suddenly had trouble walking and shaky hands, and was extremely agitated. When Ellery was diagnosed with a rare neurological condition called opsoclonus myoclonus syndrome (OMS), Kayla and Joel tirelessly supported them.

Kayla and Maura share their harrowing journey, their families’ boundless support for each other, and advice for anyone looking to help families like theirs.

Kayla: Creature comforts help bring normalcy in crisis

When Robbie was born, Joel and I made it a point to ensure that Robbie was known first as a child, and second, as a child with hemophilia. When Robbie developed an inhibitor at 16 months and needed a central line in order to receive daily factor infusions, I took a leave of absence from work to take care of him (and myself!).

That’s when it dawned on me that when families are going through a health crisis, it’s the creature comforts that bring a sense of consistency and normalcy to a very scary situation.

– Kayla Klein

Joel and I kept Robbie’s health concerns private, but one night when Joel and Brad were out to dinner with friends, I needed help infusing Robbie through his PICC line (while his central line was healing). I called Maura, who was 37 weeks pregnant, to see if she could help me. She came over and I still have the image of a very pregnant Maura holding a baby Robbie on her lap so I could infuse through his arm.

From there, Maura ended up being the go to person I would call when we were in the Emergency Department, inpatient, or had received bad news. She didn’t need to say much, but would somehow always appear with a kale Caesar salad and a cookie. I would gobble those salads up and look forward to when she would bring another.

That’s when it dawned on me that when families are going through a health crisis, it’s the creature comforts that bring a sense of consistency and normalcy to a very scary situation. When Maura and her family began staying at Boston Children’s Hospital, I knew I needed to reciprocate with those same comforts that made visits and stays at the hospital manageable. 

At the end of August 2019, Robbie was admitted to Boston Children’s for a week due to a central line infection. Maura, Brad, and Ellery were there on day one, having dinner with us in on the 6NW patio. It was so comfortable —t he kids were playing catch while we were enjoying a relaxing dinner, you could have thought we were out to eat in downtown Boston!

Maura: A shocking diagnosis and the comfort of friends

When Ellery was first hospitalized, I didn’t know first-hand what it was like to have a child with a serious condition, and the initial shock of the OMS diagnosis was terrifying. We were scared about everything that was happening with Ellery, and Kayla and Joel provided us a wonderful support system. We didn’t have to explain how we felt; they just knew and could understand because of their experiences.

Kayla, Joel and their family visited us in the hospital and Ellery was thrilled to see their familiar faces. Kayla also helped me figure out how to navigate the inpatient hospital world — offering tips such as the best floor to park on, what to bring for our overnight stays, and where to get the best coffee.

Now that we’re coming up for air, we’re trying to normalize the hospital and regular IV infusions for Ellery. Having Robbie as a “medical role model” for Ellery has been so helpful. Ellery looks up to him and it gives her comfort to see other kids going through similar things. Both kids frequent the Center for Ambulatory Treatment and Clinical Research (CATCR) infusion center and we’ve started to leave little notes and pictures for each other’s families on the waiting room wall. It provides some comfort during those difficult infusion days. 

You have these friends who turn into family. Our lives have become more intertwined than ever before and in a way that was unexpected. We are all are trying support each other in any way we can.

Our tips from the trenches

Any diagnosis is certainly going to change your life, so having a support system is extremely important. Here are some tips we’ve learned over the past few years:

• Find a go-to person who “gets it” — someone who understands what you are going through, who you can talk to and cry to. It doesn’t have to be someone whose child has the same condition as yours.
• When someone says “let me know if I can do anything,” take them up on it. Ask for a pizza to be delivered, for your dog to be walked, or for your kid’s after-school sports forms to be delivered.
• Find the humor. There is something funny about your 6’4” husband sleeping on a pull- out chair bed.
• Know when to tag out. Have someone come hang with your child so you can stay fresh. Go for run, take a shower, or take your other children to the park.
• Take one day at a time. It can all be overwhelming, but if you break it down in pieces, everything seems more manageable. 

Read about Ellery’s journey with opsoclonus myoclonus syndrome.