Born with a rare medical condition (Congenital Central Hypoventilation Syndrome) Thomas is unable to breathe deeply enough for himself when he is asleep, tired or poorly.
Thomas currently has a tracheostomy to connect him to his breathing machines and is dependent on a mechanical ventilator throughout the night and some times during the day. He needs 24 hour care and support.
This year, the family were able to go on a holiday together – organised by Breathe On UK.
Breaks like these give ventilated children the space and time just to be children, and families the time to enjoy being together. Nothing can be more frightening, for a parent, than watching your child depend on nurses and mechanical equipment for every breath. Whether facing the initial diagnosis, or the constant and relentless stress of caring for an LTV child, the feelings of isolation can be overwhelming. Your support can help us to continue helping families to cope.
Unfortunately, we have had to suspend our Forum. We are hoping to be able to reinstate it at some point in the future.
A video message from Matt Hampson: