Your child receiving a diagnosis of pulmonary hypertension can be life-altering. Once the initial shock of having a child diagnosed with a disease that most have never heard of fades, parents are left with the reality of living with PH. Although significant changes in lifestyle are often necessary to accommodate PH, most children continue to lead happy and fulfilling lives. PH parents continue to raise their families and can find ways to make day-to-day tasks a little easier while caring for their child.
Resources and support make living with PH easier. PHA Canada’s Pediatrics Committee is currently developing resources to help families of children with PH. If you would like to connect with other PH families in Canada or would like to share ideas about resources that would be useful to your and other families, please contact us at firstname.lastname@example.org.
As a parent or family member, the more information you have, the more equipped you will be to advocate for your child in a variety of situations. Explore these resources to learn more about some of the issues and challenges that are unique to children living with PH and how you can help your family to deal with life with PH.
Resources in the School Package are designed to assist parents/guardians in the task of informing a school (or daycare or camp) about a child's needs and condition.
PH families form a small network across Canada. Our National Conferences are a great place for families and little PHighters to meet, play and exchange with others in similar situations.
Here are examples of activities that were designed for our youngest members:
Little PHighters were hard at work at the Teddy Bear Clinic set up in the Kids' Room at our 2015 National Conference!