They were told to write to the Parliamentary Ombudsman if they disagree with the funding decision.
Amy, 32, of Silverdale, Staffs., said: “We are in contact with the gentleman who paid £11,000 for that first op and in his opinion the NHS should return the money.
“Ben is currently suffering with his hips and he really needs that to be treated before further damage is done.
“His account is currently empty. We are waiting on a donation via cheque to clear so we can pay Ben’s therapist to treat his hips.”
That cheque should clear this week, but the family is still looking to pay for physio which costs up to £1400-a-month.
The muscles around Ben’s hips are weak and will take time to get stronger, creating problems in his lower limbs.
His feet twist to compensate for the lack of movement in his hips, making it painful for him to walk.