Three-year-old Rosie continues to astound her mother, Nicole Pallone of Starwood, British Columbia, Canada. Rosie was born with a rare metabolic condition called phenylketonuria or PKU, where her body has trouble processing protein.
It’s one of the genetic conditions they check babies for when they do a heel stick blood test before the newborn is sent home. If you’ve gone through prenatal counseling or classes, you may have heard about it as the instructor told you it almost never comes up positive. But for Rosie it did.
That means she needs to be on a low phenylalanine or “Phe” diet for the rest of her life. In her case, she responds to a prescription medicine that helps, so she has to take pills every day. At her early age they are ground up in juice.
This would be tough for anyone, but kids can surprise you, as Rosie does. She understands fruits and vegetables are good for her condition and a lot of cheese or meat is not.
Over the years I have spoken with many children with chronic conditions. It may be diabetes or epilepsy. It may even have been where they’ve been treated for cancer and been cured or gained a deep remission.
Kids can begin to understand a lot at an early age and, with guidance, begin to take on ownership for the management of their care. Rosie is on that track and calls herself a “powerful patient,” at only three years old!
You will find the video Rosie and her mom produced for Patient Power to be quite heartwarming and one that underscores that many children with serious conditions can still muster tremendous power to have a rewarding life.
Watch “Mother and Daughter Duo: Providing Tools for Early Management of PKU” at http://www.patientpower.info/video/mother-and-daughter-duo-providing-tools-for-early-management-of-pku?autoplay=1
PKU, Rosie’s health concern, is a good example of how we are making medical progress to help children do well. Not only are new medicines and less invasive tests developed, but so too is psychological support for the child and the parents being refined.
Plus, even with very rare conditions, there are online communities of other children and parents ready to be by your side. For example, Rosie and her mom both are active with Canadian PKU and Allied Disorders Inc. (http://www.canpku.org/) a nonprofit organization to help others in Canada.
So what’s cool today is that kids are sharper at earlier ages, they have other kids and savvy healthcare professionals to help them, and medical science is making progress.
It’s working for Rosie. Years ago, someone with PKU could potentially develop severe cognitive deficits and even be institutionalized.
Because of progress, and maybe her own pluck, you can expect a very different future for Rosie. Maybe Prime Minister of Canada?
About the author: Andrew Schorr is a medical journalist, cancer survivor and founder of Patient Power, a one-of-a-kind company bringing in-depth information to patients with cancer and chronic illness. Audio and video programs, plus transcripts, help patients make informed decisions to support their health in partnership with their medical team.
Patient Power is at www.PatientPower.info and on Facebook, YouTube and Twitter. Schorr is also the author of “The Web Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis" found at www.websavvypatient.com/
Resource:
Interview, Nicole Pallone, Vice President, Canadian PKU and Allied Disorders, and Rosie Pallone, PKU patient, 1/10/12, online at Patient Power: Mother and Daughter Duo: Providing Tools for Early Management of PKU: http://www.patientpower.info/video/mother-and-daughter-duo-providing-tools-for-early-management-of-pku?autoplay=1
Resources for patients and families:
PKU Support Groups and Programs in the US and Globally: http://www.pkunews.org/support/groups.htm
Canada: Canadian PKU and Allied Disorders Inc.
http://www.canpku.org
Patient Power PKU Health Education Center: http://www.patientpower.info/health-topic/phenylketonuria
Reviewed January 17, 2012
by Michele Blacksberg RN
Edited by Jody Smith