A Calverton mum has raised more than £150,000 for charity in memory of her toddler who sadly died after battling a rare cancer. Jessica and Lee Neal, 35 and 38, lost their 16 month old son Ted in April 2022 to an aggressive form of cancer that was so rare it did not have a name when he was first diagnosed.
A mesenchymal chondrosarcoma tumour was found in Ted’s sinus and it later spread to his brain and spinal cord, causing him to pass away on April 9, 2022. Jessica and Lee first noticed that Ted's face had swelled whilst they were on holiday and initially thought that he had rubbed sand into his eye at the beach, but his mum had a gut feeling that something wasn't right.
Tests found that the toddler had a cancerous tumour in one of his sinuses, which was so rare it was not named until January 2022. The couple have since set up the Little Ted Foundation to keep Ted's memory alive and help other sick children.
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The charity was founded using the £73,000 that had been raised to fund experimental treatment for Ted in the Netherlands, and since the foundation was set up last year a further £88,000 has been raised to support more than 150 different families with grants and holidays.
Jessica, who is a trainee nurse, said: "For us it was good to have something positive to focus on and it was a distraction at that time. We had raised a significant amount of money for Ted’s treatment, but we knew we could not use it for the treatment anymore.
“We just wanted to do something positive with it and help as many families as possible. Every grant request that comes through takes me back to exactly where we were and that’s the reason why we started the charity.
“We know what these families are going through and for us to be able to provide them with a small amount of assistance is a comfort to us." Ted's older brothers, Ben, 16, and Charlie, 15, are both active fundraisers for the charity.
Jessica added: "Ben and Charlie have been absolutely brilliant. They have come to every single fundraising event and Ben does all the IT for the charity.
“They have been a very big help. They have been fantastic, and I think it is something that as they get older, they will get more and more involved.”
Earlier this month the family marked the first anniversary of Ted’s passing by spending the Easter weekend on holiday in Devon. Their charity provides grants to families who have seriously ill children to help with the cost of living or to fund special ‘memory maker’ days out.
One family who received a grant were Eloise Pyper, 32, husband Ian, 21, and their children Esti, three, and six-week-old twins Asher and Elodie who were born at Addenbrooke’s Hospital in Cambridge in February after a routine 20-week scan found Asher had chronic kidney disease.
Once born he and Ian were transferred to a hospital in Nottingham. A Nottingham nurse put the family in touch with the Little Ted Foundation, which provided a £200 grant for fuel and a hotel so that Eloise, Elodie and Esti could visit.
Eloise said: “We had had to book a hotel because only one parent can stay at the hospital and up to this point, I had still been at Addenbrooke’s with Elodie. At that point I hadn’t seen Asher for about four days.
“It meant we could all be together for the first time as a family as until that point none of us had been in the same room together. Our three-year-old Esti hadn’t seen all of us together. It made us be together as a family and I don’t think you can put a price on that.”
The Little Ted Foundation also owns a mobile home getaway near Snowdonia National Park in Wales called Ted’s Lodge where families can stay for free and get £50-a-day spending money.
Jessica explained : “We bought the caravan in Wales specifically for the charity just after Ted passed away because when Ted was ill, we were able to go away as a family for one weekend. That meant the world to us.
"We only went 40 minutes away from home because we couldn’t be too far away from the hospital but the memories we made are really important to us. The other side of it is that when Ted did pass away, we needed to go somewhere away from home and take our children and go for a break.
“Before Ted got ill we were only able to take him on one holiday and that was to Snowdonia so that was why we chose that area. We think about how many people we have been able to help, and we are really happy that Ted’s legacy has had an impact on so many families."
She continued: "I don’t think we really think very often about what we’ve actually done. It’s not really what it’s about and there are so many other people involved in fundraising.
“It is definitely not just us and we certainly can’t take all of the credit. Our end goal is that we are able to offer a grant or holiday to anyone who needs one.
“We want to be able to buy more caravans all over the country for holidays in different areas that people can get to more easily. Our next goal is to open local community bereavement hubs for families to be able to pop in any time during the week and always have someone to talk to.”
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