Local children hospices can offer vital support; their nursing, care, play and family support teams are experts in delivering the crucial emotional, spiritual and developmental aspects of care that families need. Hospice teams take the time to really get to know the family and fully understand their wishes. They offer vital respite support, giving them the chance to recharge their batteries and regroup in a calm, fun and welcoming environment. At the end of a child or young person’s life, they pull out all the stops to give them a peaceful and dignified end, surrounded by family members. Hospices are not a sad place to go to, they accommodate fun and sensory play for children and their siblings. Some hospices also offer support to parents and grandparents after they have tragically lost their little one. Their bereavement counsellors are further trained to deal with this particular type of bereavement, they are specialised. Please contact your local hospice to see what support they can offer you on your journey
Sense is a wonderful national charity supporting and campaigning for people who are deafblind and those with sensory impairments.They offer high quality, flexible services across the UK, using skilled staff and a dedicated network of volunteers. They tailor the support they offer to the individual needs of each person so they can live as independently as possible and participate fully in the lives of their local communities.
Sense have already supported our family meet ups by providing an incredible group of volunteers to work with our children while parents attended meetings. They have also offered their services to our families at home.
Our team here at Zellweger UK are hugely grateful for the wonderful support from the wonderful team at Sense.
Cruse supports Zellweger UK families at our family meet up days, for professional counseling service. They have helped us to enjoy the memories of our loved ones. There are around 70 Cruse areas throughout England and Wales. They are all working towards offering a range of services- but many do not have any paid staff and are run by very committed volunteers- so as such their services maybe slightly limited in your area.
Please check out their website for more details www.cruse.org.uk