Our aim is to offer Hospital Aftercare and Equipment to families that are supporting a loved one with Mitochondrial Disease.
It can be a daunting time leaving the hospital, we can offer guidance and support so that you are not alone. If you require information on aftercare please use our contact tab and leave a message.
Our end goal is our own hospice, having end to end care in one place.
Here are some links to useful information and support:
Muffins Dream Foundation (Putting ability into disability! Boredom buster bags, Tea parties, activity days, birthday parties, supported events)
www.muffinsdreamfoundation.org
Email hello@mufffinsdreamfoundation.org
Face book www.facebook.com/muffins.dreamfoundation
Fledglings (Product Solutions for children’s special needs)
www.fledglings.org.uk/
The Bluebells (Respite, a home from home style)
www.sebastiansactiontrust.org/family-services/the-bluebells
Telephone 01256 391854
Naomi House (Respite with Carers & Nurses on site with Doctors on call)
(Will need to be referred by your Community Nurse or Paediatric Doctor)
www.naomihouse.org.uk
React (Funding Charity, help with whatever you need, White goods, holiday etc)
http://reactcharity.org/
Family Fund (Funding Charity, help with whatever you need, White goods, holiday etc)
www.familyfund.org.uk/
Portage Services (Provides home support, a service for children with additional needs from birth to school age, encourage learning and play)
(Will need to be referred from your Community Nurse or Paediatric Doctor)
http://www.wiltshireportage.btck.co.uk/
Physio (Need to be referred by Doctor/Specialist)
Occupational Therapist (Need to be referred by Doctor/Specialist)
Speech & Language (Need to be referred by Doctor/Specialist)
Apply For DLA, fill in forms, get Doctor or specialist contact details for form to do their bit. https://www.gov.uk/government/publications/disability-living-allowance-for-children-claim-form
Carer’s allowance apply online
https://www.gov.uk/carers-allowance
Council tax reduction
https://www.gov.uk/apply-council-tax-reduction
Specialist Chairs
https://www.specialisedorthoticservices.co.uk/product/p-pod/
Specialist equipment, Standing, Seating & Play
https://www.fireflyfriends.com/uk/
New Life/Grants for equipment
http://newlifecharity.co.uk/docs/care-services/Newlife-Equipment-Grants.shtml
Also, contact Gas/Electric supplier for support with discounts
