An Irish children’s cancer charity is urging the public to respect social distancing guidelines to reduce the risk that Covid-19 poses to children with low immune systems.
Children receiving cancer treatment can have severely-compromised immune systems so contagious diseases like Covid-19 are a major threat to their health. For any parents whose child has been diagnosed with cancer, the current pandemic is yet another crisis to overcome.
“This is a very, very scary pandemic because any infection can be so dangerous to a child that has a deflated immune system,” says Jimmy Norman, who set up the national children’s charity Aoibheann’s Pink Tie.
Aoibheann’s Pink Tie was established after Jimmy’s beloved daughter Aoibheann died from cancer at the tender age of eight. He points out most healthy people don’t have to fear Covid-19 but that vulnerable people are relying on them to adopt social distancing.
“A child that has cancer has no protection and it’s down to people to protect the weakest and to protect those that can’t protect themselves,” says Jimmy.
“Please stay at home. Please don’t socially interact. It’s not about you or me. It’s about everyone joining together and caring about other people.”
The charity is currently sourcing hand sanitiser and personal protective clothing (PPE) for the families of children who are receiving treatment so that they’ll be protected in the event of shortages.
“We’re out at the moment searching for masks for the children and as much sanitiser and PPE as we can because I believe we’re in for a very long battle.”
The Norman family’s world fell apart the day that Aoibheann was diagnosed with a rare form of cancer in January 22, 2009. She was just seven-years-old.
“In my whole life, I’ve never experienced anything like the pain I felt at the time,” Jimmy recalls. “I cried and screamed so hard that it actually cleared out the day room of Temple Street Hospital.”
Over the following months, Aoibheann was in and out of St John’s Ward in Our Lady’s Children’s Hospital in Crumlin. Her treatment left her neutropenic and unable to fight even the simplest infections.
“That’s where the immune system becomes completely depleted. A child that’s neutropenic has absolutely no defence against anything. A common cold can kill them.”
Long before Covid-19, the family had to learn about proper handwashing and sanitisation. Jimmy points out that the corridor between St John’s Ward and the rest of the hospital is over a kilometre long to keep the children away from possible sources of infection.
His time on the ward also opened his eyes to the lack of support structures for the families of children with cancer. Parents were travelling to Crumlin from all over Ireland and many were struggling financially as well as emotionally. Jimmy himself was let go from his job as an aircraft mechanic during this time but his community and friends rallied behind the family with fundraisers and practical help.
Aoibheann had to undergo major surgery to have a 2.5kg tumour removed. She survived the operation but, in February of 2010, Jimmy and his family were told that she didn’t have long left.
Along with his friend Mick Rochford, with whom he would go on to found Aoibheann’s Pink Tie, Jimmy resolved to make Aoibheann’s remaining days special. The next nine weeks were filled with activities and meetings with the likes of Westlife and the president. Aoibheann passed away on April 7, 2010 – just six days from her ninth birthday.
On the day of her funeral, the family asked all the men to wear pink ties as that was Aoibheann’s favourite colour. The charity would adopt the name Aoibheann’s Pink Tie as a tribute to the brave little girl that inspired it.
“In that time in the hospital, the one thing that stood out to me was that there was no organisation representing the families or that the family could turn to for help if they had a child with cancer,” says Jimmy.
Many of the parents he met in St John’s Ward didn’t have a support structure they could rely on or were having financial difficulties. Others had to travel long distances to bring their child to Crumlin for treatment, even if they were struggling financially.
Jimmy and Mick decided to set up Aoibheann’s Pink Tie, which held its first fundraiser in 2010. From there, things took off and the fundraisers got bigger and they were able to offer more and more assistance to families. It now provides families with financial assistance and a range of much-needed support services.
“Every year, there are about 200 kids that are diagnosed with cancer in Ireland so you’re averaging out about four children a week,” explains Jimmy. “We don’t just give financial intervention. We have a lot of other programmes.”
These include a private page for parents to connect, access to psychologists, the provision of specially-designed toys that teach the kids about chemotherapy, and dry suits for children with low immunity that allows them to go swimming.
“We also spend on average €120,000 a year on hotel accommodation for Dublin. So if you’re coming from Donegal or Galway or Cork and you haven’t got the financial wherewithal, we’ll pay for accommodation in a hotel.
“Helping people with temporary accommodation in a hotel is a huge, huge relief for the parents that are suffering. If their car breaks down, we’ll get the car fixed. If they have no money for groceries, we’ll give them vouchers for any of the big stores that are near them. If they haven’t got money for petrol, we’ll give them vouchers for petrol.”
Last year, it spent €240,000 on financial contributions for families to help them get through this difficult time. The charity recently bought a house in Crumlin that can be used by parents travelling with their child for treatment.
“I’m asked many times about Aoibheann’s Pink Tie and what we will do,” adds Jimmy. “The real clear answer is we will do anything. It’s a fluid organisation but it responds to the needs of the children and the parents.”
The cancellation of fundraisers due to Covid-19 looks set to take a toll on Aoibheann’s Pink Tie’s ability to support families. Jimmy estimates that funding will be down by €400,000 this year.
“We have huge expenses,” admits Jimmy. “The blood of APT is fundraising. We receive no government funding. We receive no HSE funding. We receive no funding from anyone except the general public.”
Without the ability to hold fundraisers, the concern is that the charity will need to cut back on the assistance it provides, such as accommodation funding. With many people losing their jobs due to Covid-19, this assistance will be more important than ever in the future.
Many of its major fundraisers have already been cancelled or are on hold indefinitely. Public support is vital if the charity is to continue to help these children and to support their parents.
“Parents of a child with cancer know that there’s a port of call. They know there’s a lighthouse out there. They know that there’s a place that they can go and if they ask for help, they can get it. Whatever it takes to keep this organisation, we’re going to do because it really is so important.”
Or you can text PINKTIE to 50300 to donate €2. Text cost €2 and Aoibheann's Pink Tie will receive a minimum of €1.80. Service provider: LIKECHARITY. Help line 076 6805278.