The McBride family have been shielding since March last year to protect James from infection.
Kevin McBride said it is unclear when his four-year-old son James might be eligible for vaccination.
Without it his family will not be able to return to normality, he said.
Vaccines are currently offered only to very high risk children over the age of 12.
Mr McBride, his wife Ann-Marie, and James’ sister Anna and brother Ryan have been shielding since March last year to protect James.
“If James gets infections he can get quite critical quite quickly and need intensive care,” Mr McBride told BBC Radio Foyle.
Since he was born, James has had open heart surgery and a kidney removed. At five-weeks-old he had to have a tracheostomy.
He also has one working lung.
The last year has been “difficult and challenging”, Mr McBride added, and while Northern Ireland is now taking its first steps out of lockdown, little is likely to change for the McBride family.
“We are now only at the stage where they are actually doing (vaccine) tests for vulnerable children and James is nowhere near getting a vaccine. It’s like – how long do we continue?” Mr McBride said.
James had a a tracheostomy at five weeks-old
A Department of Health spokesman said the Joint Committee on Vaccination and Immunisation (JCVI) has advised that there is no data to support the use of the vaccine in younger children.
“(The) JCVI advise only older children (aged 12 and over) at very high risk of exposure and serious outcomes, such as older children with severe neuro-disabilities and recurrent respiratory infections that require residential care, should be offered vaccination with either the Pfizer-BioNTech or the AstraZeneca vaccine.” the spokesman said.
Mr McBride said vulnerable children had been forgotten about both during the pandemic and now again as the vaccines are rolled-out.
“Covid-19 has been out since the winter of 2019, we are now in March 2021 and nobody has thought along this process – what is happening to the vulnerable children out there and their families?
“There are other families dotted around Northern Ireland in similar situations to ourselves.
“it is increasingly complicated to keep surviving,” he added.
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