Learning to live with your heart condition is a challenge for children and young adults. Little Hearts Matter offers different types of support for different age groups of young members.
0–8 years old
Throughout a young child’s life we will be working to support their parents and families to understand their condition and the effects it will have on their lives. When we hold an LHM event this age group of children can join in and play. At national events there will always be a qualified creche team. Sometimes there will be a party or activity organised for the children with entertainers and games.
8–11 years old
This group of young members begin to receive more support and information from the charity. They will receive an age-appropriate newsletter that highlights activities and introduces the young members to young people’s services; this is sent out three times a year. They will be able to take part in more structured activities at national events where the sessions will be run by trained teams that focus on encouraging confidence and a simple understanding of their heart condition. They will also be encouraged to make friends in a fun-filled environment. With parental support they will be able to explore the Zipper Zone section of the website where they can ask questions and can access information about lifestyle issues.
11–16 year olds
Once the children have moved into secondary school they will join the Youth Zone. This is run by the LHM Youth Leader Lexie. She will send out age-appropriate newsletters that explore living with a heart condition but which also have an element of fun. These young members will be invited to take part in Activity Weekends and Education Days where they will explore their heart condition and seek solutions to the challenges that having half a heart brings. They will also have an opportunity to meet with other young members, making friendships and helping them feel less alone.
They will be able to access the Zipper Zone section on the website where they can ask questions and access information about lifestyle issues.
Once the young members reach 13 they can request to join the closed Facebook site. This allows them an opportunity to chat with other young members and create friendships across the UK.
They can access and download booklets that explore lifestyle issues. For example, school, further education, puberty and sex education.
16–18 years old
Once the young members reach this age they seek more advanced lifestyle and support services. These will be offered with one-to-one support from the Youth Leader and connections through Facebook and via the Zipper Zone site. Written newsletters and booklets aim at empowering the young adults with a greater understanding of their heart condition, treatments and lifestyle challenges. Events geared to increasing young adults’ understanding of their condition and reducing any feelings of isolation will be offered nationally and regionally.
18 and older
Adults with single ventricle heart disease will be able to access information and support through the Youth Leader and via social media, national and regional events, the information resource on the website and via the adult-focused newsletter.
Brothers and sisters of children with a complex heart condition often need age-appropriate information and support. Currently, brothers and sisters are invited to all national and regional events and enter into sibling-specific workshops. Over the next few years the Little Hearts Matter team will be further developing resources for the Sibling group.