10 Things No One Ever Told You About Being a PKU MomAjinomoto Cambrooke
— An interview with Lynn Paolella, Founder of Cambrooke Therapeutics and the loving mother of two PKU’ers.
For all the Moms out there who just got the diagnosis, or recently became familiar with PKU, Lynn herself can never forget the day when she first got the diagnosis of her newly born son, Cameron, with PKU. It was one of the most intense and shocking days of her life, she had never heard about PKU and had the most natural reaction to it and said “PK… what!?” Later, when explained by the pediatrician, all that resonated with her were the words, Mental Retardation and its consequences.
What was your initial reaction to PKU when you first received the diagnosis of your son?
“Back then, it was much different, much less was known about PKU compared to today. It was not just my family, but so many families went through a similar initial shock followed by confusion; there was far less awareness and most importantly, there was this constant feeling of doubt, would everything be OK, would my child be normal, would he feel different?”
After settling in with the news and trying to work around PKU, how did you adapt to the new lifestyle that came along?
“As a mother, you want to nurture and protect your child, in my case it was something that I had to educate myself about, first, to be able to provide for my children. It was definitely overwhelming. It was one day at a time, researching, reading, doing everything I could to learn how I would need to change and adapt our family’s lifestyle. But with the help of Boston’s Children’s Hospital, Fran Rohr, RD in particular, we were able to create the right rhythm of feed, blood tests, and monitoring Phenylalanine levels weekly which helped me greatly to layout an agenda of how and what I was going to be doing. In addition to educating my husband and me, she connected us with other local PKU families who would eventually be my lifeline.”
Once you became familiar with PKU and set patterns for your day-to-day life, were you nervous about sending your kids to school and their having to adapt to this big change?
“Sending my kids to pre-school initially made me very nervous. I was scared that they were not going to be under my care and was so worried that they, for the first time, would be among many children (not just one or two friends) that ate so differently. I feared they would ‘feel’ different and be tempted to eat something that they were not supposed to. The fact that they could not eat the same foods or “perceived normal foods” as other children was excruciating for me. So I began to show up to their pre-school where I took responsibility to educate their teachers about PKU. I included everyone, both staff and classmates by bringing in a variety of low protein treats to share. One of the treats I brought was a make-it-yourself low protein Ice cream, which was a super fun project everyone made themselves and enjoyed eating! Once the ‘fun-factor’ was attached to the low protein foods, I knew they would not feel so isolated.”
Once they were on diet, how did you plan and carry out your family meals? Did you change your diet too?
“I set the rules, and my motto was simple yet effective, to never put anything on my kid’s plate that I would not personally eat myself. The food had to look good, smell good, taste good and be enjoyable to my kids. At the family table, typically the noodles, fresh-filled pasta or the bread was the main event. There’s a whole world of dishes and sides out there that round out and compliment a plate of pasta or fresh, grilled, toasted Artisan Bread. I consider them as culinary vehicles for a multitude of different flavorful foods such as fresh veggies, salads, sauces, guacamole, relishes, tapenade, salsas, gravies, etc. Often, I add a side of protein for those of us that do not eat the low protein diet but when we eat together, most of the food we eat can be shared among us. This definitely worked out and we continue to follow this tradition to date.”
Were there times that it was hard for you to keep your children on diet?
“Oh yes, definitely, you know teenagers! Their social life was expanding, hanging out with friends, dating; all these factors came into play and they occasionally cheated. As a mother, I knew it was part of growing up so I decided to deal with it with a sensible approach. I created values in them, and made them keenly aware that the way they felt was connected with what they consumed. If they were not following their diet properly, they would feel it. I eventually developed newer and better recipes to match the growing needs of my teenagers and soon I was looking at a vast range of all kinds of foods like medley meals, Go Pockets, bagels, spicy foods, fresh-filled pastas, artisan breads, ethnic foods and whatever I could make that would fit their new and changing lifestyle.”
Were there times when things became stressful and you felt like you were not able to help your kids?
“Most definitely, hardships are a part of the journey and you know how they say when a mother sees her child suffer, she suffers more. We dealt with those tough days as a strong pulled together family; whenever something went wrong, we were each other’s biggest support systems; knowing that imparted strength in all of us to get through those days as well.”
What were some of the things you began to do for others in the same situation as you?
“I wanted to help not just my children but the wonderful PKU community they are a part of. In addition to starting Cambrooke Therapeutics, I undertook various projects like developing the School Lunch Program. A program where you could get low protein foods at the same cost as regular foods in the cafeteria lunch line. I created a college dining program where there may be a lack of low protein diet options in the college or university. Partnering with Disney World/Land was one such amazing project, plus Sea World and cruise lines that now would offer low protein foods. I wanted low protein foods to be available where needed and for other PKU individuals to also have options when it came to low protein foods wherever they go.”
As a PKU mom and the Founder of Cambrooke Therapeutics, what is your advice to mothers that are going through the same?
“My advice is to find a support group near them. Find someone they can share their efforts and struggles with. It can be a local support group or the National PKU alliance. Follow your curiosity with the diet, the social aspects and educate yourself as much as you can.
And as I always say, I am an open door for those who need support in this cause. I would love to be a resource for those trying to find answers and I am always happy to provide any help I can.”
— Lynn Paolella
Mom to Bryce 27, Cameron 25 CPKU, Brooke 20, CPKU.