Families should never have to trade privacy for support.
Harper's Heroes involves information about children and, where a family chooses to share it, information about health. We treat that as something we have been trusted with, not something we own.
The Hero register is private
Joining Harper's Heroes does not create a public profile. A child's name, diagnosis and contact details are not published because they have registered.
We ask for less, not more
We do not ask for medical records or a complete treatment history. We collect the information we need to identify the child, understand relevant recognition dates and contact the right adult.
Media is separate
Photography, website stories and social media use are separate decisions. A child does not lose membership, gifts or event opportunities because a family says no to publicity.
Third-party referrals are limited
Friends, relatives and professionals can introduce a family, but we do not ask them to provide detailed medical information about somebody else's child.
Admin access is restricted
Sensitive records sit behind authenticated administration. Access and changes are logged, and production administration requires an additional authentication code as well as a password.
Events have their own information
If we need allergies, accessibility or safety information for a particular event, we ask for it for that event rather than building an unnecessary permanent medical profile.
What we collect and why.
Who is responsible for the information?
Project Golden Child is currently a privately funded initiative operated by Adam and Jenny Walker. They are responsible for deciding how personal information collected through Project Golden Child is used. Privacy questions can be sent through our contact page.
Harper's Heroes registrations
When a parent or carer registers a child, we collect contact details, the child's name and date of birth, a postcode, the type of cancer, an approximate diagnosis date, the child's current situation and any optional information the family chooses to give us about interests or their experience. Health information is treated as particularly sensitive. We ask the parent or carer to make a clear choice about joining Harper's Heroes, explicit consent to use the health information they provide, and separate choices about recognition, event invitations, project updates and whether they are open to later discussions about photographs or stories.
Referrals made by somebody else
We collect the referrer's details, the child's name and enough parent or carer contact information to make an introduction. We require the referrer to confirm that the family knows about the referral. We do not ask the referrer for a detailed diagnosis or treatment history.
What we use the information for
We use it to review registrations, keep the private Harper's Heroes register, contact families, plan recognition, invite families to suitable events, understand where demand exists and keep a record of the support Project Golden Child has provided. We do not sell family information and we do not use a child's diagnosis for advertising.
Photographs and stories
Joining Harper's Heroes is not consent for publicity. If we want to use a child's photograph, story or identifiable information publicly, we will deal with that separately and explain where it will appear. Families can say no.
How long we keep information
Harper's Heroes is intended to provide ongoing recognition, so an active Hero record may be kept while the family wants to remain involved. We review information and communication choices rather than keeping data simply because we can. Initial third-party referrals that do not progress will be removed after a limited follow-up period. Short-term event information is removed when it is no longer needed for the event, safeguarding, insurance or another legitimate record-keeping reason.
Who we share information with
We keep sharing to the minimum necessary. Service providers used to host the secure database, send emails or store approved event photographs process information for us under controlled access. Event venues are only given information they genuinely need for safe delivery. We do not give the Harper's Heroes register to sponsors, fundraisers or commercial partners.
Your choices and rights
Parents and carers can ask us what information we hold, ask for inaccurate information to be corrected, change optional communication choices and raise a concern about how information is being used. Some requests depend on the circumstances and the reason the information is held. Contact us and we will explain what applies rather than hiding behind a generic policy.
Children and young people
We design the service around the interests of the child. We do not create child login accounts in this version of the website. Where it is appropriate for an older child or young person to be involved in decisions about their story, photographs or participation, we will listen to them as well as dealing with the required adult consent.
Safeguarding
Events are planned with safeguarding, risk assessment, emergency contacts, supervision and first aid in mind. If a safeguarding concern is raised, information may need to be recorded or shared with an appropriate safeguarding professional or statutory service. We will only do that where there is a proper reason.
This notice will be reviewed as Project Golden Child develops, including before any change in legal structure or major change in the way family information is used.