Jack's Club ~ Support Groups
Jack's Butterflies understands how easy isolation becomes the norm for families dealing with ill children. We also appreciate the very real need in finding support outside of the "safety" of our homes and widening our environment and inviting others to become part of our lives. In providing regular meet-ups, Jack's Butterflies' support groups will provide opportunities to share experiences, seek advice and build on existing support networks. We will offer an array of different activities that will hopefully appeal to all our Rare Families.
We aim to create avenues for families to create friendships with other families going through the same challenges. Providing a place these families know is a safe place they can attend on their bad days, their good days and everything in between.
Because mums, dads and siblings all have different coping mechanisms, we will offer groups just for mums, just for dads, just for siblings, sometimes for couples and sometimes for the whole family. Our bereaving families need different supports, so we will offer different groups for them.
We will also aim to run informal sessions and support groups for carers/support workers/hospital staff who may potentially be affected by the loss of a child who has impacted on their lives.
Alongside the support groups, Jack’s Butterflies aims to run youth programs for all children in the community – regardless of their association with rare disease. These programs will have a strong emphasis on teaching compassion, empathy and the value of doing something for someone else. The programs will also promote the value of having time out and a hobby and the benefits that this can have on their psychological wellbeing. Relevant to age group and interests, each group will be encouraged to create items to brighten the days of children in hospitals. Parents will be welcome to join in alongside their children.
Jack’s Butterflies understands how emergency hospital admission puts stress on the families of ill children. Often the opportunity to prepare for a hospital stay is just not possible, leaving them without everyday needed items. Jack’s Butterflies has designed a program aimed at helping people throughout hospital admissions, providing family members with the basic necessities to make hospital stays that little bit easier. Filled with toiletries and other essential items, these packs will initially be available to those with family membership and eventually made available to ALL families/patients in paediatric intensive care.
Jack’s Butterflies wants to help alleviate the financial cost involved in parents staying with their children during hospital stays. With this in mind we will provide the parents of our “rare kids” in hospital with healthy, nutritious homestyle meals including snacks. Initially Family Membership holders will benefit from this service, however, once again this will eventually extend to ALL families/patients in paediatric intensive care.
"Life isn't about milestones,
but of moments"
Rose F. Kennedy
Rose F Kennedy