“The recent floods have seen more families come to the Family Fund for help. Our grants have a positive and lasting impact on the everyday lives of families and even more so when items that are vital to the care of a disabled child are lost in such dreadful circumstances. We urge all families raising disabled and seriously ill children in Wales to contact the Family Fund and, if they can, come along to our roadshows to talk through how we can help.”

“I’ve always felt that once my family has had their award, someone else should have the chance to apply, I feel I don’t want to ask for a handout. I think that most families feel there is a stigma attached to getting help from a charity and it can look like greed. I didn’t realise that Family Fund received a grant from the Welsh Government just to help families like mine. The grants help relieve that stress and worry of having to save up or do without for items that help my disabled sons and I. Family Fund makes a massive difference and it was great to thank them in person and get help with my next application.”

“This report shows how sleep deprivation can be very damaging not just to the child but their whole family. Tiredness makes it more difficult for anyone to deal with even day to day chores and for a parent or a carer of a disabled child this is an unnecessary worry that every family can do without, especially if it is over a long period of time. “Families in this situation need to be listened to and their concerns acted on through timely and regular support. The Family Fund is helping families find practical solutions to help children sleep, but we need there to be a wider acknowledgment that families in this situation can expect to be able to access support when this starts to become an issue rather than allowing it to take root and have an even greater impact.”

“My son is six and has autism. It’s more about how sleep isn’t for us as a family. I often survive on a diet of coffee and chocolate just to keep going. On a good night, we get five hours sleep, but we don’t get too many good nights. We also have a daughter, and we need to try and catch my son before he wakes her too. The only help we get is from our Paediatrician, and we do use medication, but this only works for a limited time.”