The Jennifer Trust is concerned about the current landmark case over whether doctors should be allowed to withdraw life support from a baby boy.
Baby MB, who cannot be named, has spinal muscular atrophy - a genetic condition which leads to almost total paralysis - and cannot breathe unaided.
Doctors say it is in the 17-month-old baby's best interest to withdraw ventilation and to let him die.
But his family says he has a reasonable quality of life and should stay alive.
The judge Mr Justice Holman said the case was potentially a landmark one as it was the first time a court had been asked to make a life or death ruling on a child who has near or full cognitive function.
Anita Macaulay, chief executive of the Jennifer Trust for Spinal Muscular Atrophy, whose daughter died from the condition, said the case must be a dreadful dilemma for the parents and the doctors involved.
She said: "I know what it is like to battle and fight and pin your hopes on something happening.
"You would feel like you were letting your children down if you didn't."
The Jennifer Trust believes that parents have a right to all of the information and then be able to make informed decisions in partnership with their doctors. This case should never have come to court.
We are concerned at the negative way in which spinal muscular atrophy has been presented. Children with spinal muscular atrophy often have high levels of intelligence and babies such as MB are likely to have smiled and recognised his parents at a much earlier age than other babies.
This court case will send shudders into the hearts of all parents of children with spinal muscular atrophy, not just those who have type I but type II also as parents will fear if their child is hospitalized the doctors will not fight proactively in their child's care.
Anita added that pioneering work in the US had led to some children living at home with a relatively good quality of life until the age of seven or eight and beyond.
With drugs trials looming there is hope for these families at last. The drugs likely to be trialled first may give increased muscle strength, which could reduce the need for ventilatory support where it had been required previously.
Finally Anita Macaulay commented 'the saddest thing is that after this is all over, regardless of the outcome:- the lawyers, the judges and the doctors will all return to their normal lives whilst the parents of baby MB will have to live with whatever the outcome for the rest of theirs. It is vital that parents feel in control of these decisions for this reason alone.'
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