Sandra Kennedy said her eight-year-old daughter Penny’s health condition makes her so vulnerable she could not even receive a vaccination.
Sandra and her husband, Mark, care for their daughter at their home and say they urgently need vaccinations themselves to protect Penny.
“The doctors and nurses on Penny’s medical team are astonished that we as her parents and carers have not been vaccinated,” said Sandra (37).
She and Mark live in Longwood, Co Meath, with Penny and their other children, Lucy (11) and Jackson (3).
Penny, who is fed through a tube in her stomach, has a rare disease, Trisomy 12p, that causes a raft of serious conditions, including several forms of epilepsy, blindness, impaired hearing and hypotonia, where she lacks the strength to walk.
She is also developing scoliosis and her immune system is heavily compromised. Sandra said her condition causes dislocated joints.
While undergoing surgery on her kneecaps last September, her compromised immune system resulted in her contracting sepsis, shingles and the MRSA infection.
She was admitted to the intensive care unit and remained in hospital for nearly three months.
“Penny has no protection against Covid, so Mark and myself need to be vaccinated. Our doctors say we should be vaccinated, but our pleas have been met with a stone wall,” Sandra said.
“We are cocooning since March last year to protect Penny. If she got Covid, I couldn’t forgive myself. I’m exhausted fighting constantly for her.
“Mark is heartbroken that we can’t protect her by being vaccinated. We have to bring her to hospital frequently.
“Her rare disease means she’s unlikely to survive into adulthood. We should be trying to help her enjoy her life instead of being so limited by the lack of vaccination.”
Sandra blames the Government for excluding carers from having a priority for vaccination. As a result, the vaccination programme as designed has put Penny in peril, she said.
Nurses visit several times a week to help with Penny’s care. She has not been able to attend her special school in Navan since March last year.
When contacted by this newspaper, an HSE spokesman said: “The Health Service Executive is administering the vaccine as per the Government’s allocation strategy and in line with the National Immunisation Advisory Committee (Niac).”
Catherine Cox, head of policy and communications at Family Carers Ireland — the national charity supporting family carers — said her organisation has lobbied tirelessly over the past 12 months for family carers to be prioritised for testing and vaccinations, “but, unfortunately, this call has fallen on deaf ears”.
“As the country emerges from lockdown, the charity is now calling on the Government to rethink the value of care in the home and immediately put in place adequate supports and services for Ireland’s 500,000 family carers through the implementation of the Carers Guarantee proposal committed to in the Programme for Government,” she said.
“The last year has been particularly difficult for family carers, with services and supports shutting down and many facing 24/7 care without the support of family and the wider community.”
The charity is running a campaign to raise funds to help carers.
“Unfortunately, while the demand for our supports has never been greater, our ability to fundraise and support these cases has never been more difficult,” Ms Cox said.
“During the pandemic, we have put food on tables, oil in tanks and funded private autism assessments for children on a waiting list for over two years with no hope of accessing necessary supports without a diagnosis.”
A national fundraising campaign, Paws for a Cause, is under way and donations and registrations can be made through www.familycarers.ie and on freephone careline 1800 24 07 24.