Living with a diagnosis of Mitochondrial Disease can be an isolating and terrifying situation to be in. Both for those directly affected and those around that love them. Because of the support of our fundraisers we can be there for our families at the darkest of times. We can't make them better (yet), we can't bring loved ones back but we can break down barriers and provide much needed information and support.
We are available by phone, email and in person and we help connect families who then support each other.
We also fund family hospital accommodation to help keep parents close to their sick children.
We work in partnership with Child Bereavement UK who can offer bereavement counselling to help families deal with the loss of their child and can put people in contact with advisers to help with benefits advise.
Someone to Listen
As a team, we have personal experience of this disease as well as medical understanding. We are here to listen.
You don't need to worry about what you say to us, or how you say it because we have been there. One simple phone call can help you realise you are not alone.
We can also put you in touch with other families affected by Mitochondrial Disease. Through linking affected families, your support network builds and you feel better able to cope with what lies ahead.
To get in touch call Liz on 0300 400 1234 or 07947 257247 or email her [email protected]
From experience the role of a hospice can be invaluable from the point of diagnosis. They offer support for the whole family, including siblings, respite, information and much more.
For more information and "how to find your local hospice" please visit: Together For Short Lives
We are delighted to be working together with Rosemary Bell who is the Welfare Benefits Adviser at the specialist Mitochondrial Disease clinic in Newcastle.
The welfare benefits system is very complex with many changes taking place as part of Welfare Reform and we are keen to make sure that families known to The Lily Foundation and their carers are not missing out on benefits and tax credits that they may be entitled to.
Please contact [email protected] for more information on this service.
We are very proud to be working in partnership with Child Bereavement UK to offer affected families professional support, counselling and signposting. We have met with CBUK on many occasions and held a workshop at their head office so their support team become more familiar with Mitochondrial Disease.
CBUK can help families from the point of diagnosis, through to child bereavement and beyond.
To visit their website go to www.childbereavement.org.uk
The Lily Foundation has links with groups on Facebook that can offer real support and comfort to people when they need it most.
However Mitochondrial Disease effects you, wherever you are on your journey. Please email [email protected] for more information