Sebastian's parents pledge funds to help children with complex medical needs

It’s been just over a week since they lost their son six-year-old Sebastian after he succumbed to neuroblastoma, a rare childhood cancer.

The fact they are able to able to function says a great deal about Lindsay and Gregg Nunney’s inner strength and pragmatic attitude.

In the days since the Kettering boy passed away at Northampton General Hospital, with his family at his side, Lindsay and Gregg have been busy working through the ‘red tape’ involved in any death.

But as well as funeral arrangements for the private service, the couple have been thinking about how to help other families using the £130,769 fundraising pot built up for Sebastian’s needs.

Gregg said: “We want to help other children with critical medical needs, and their families, who have had their lives turned upside down.

"We know how hard it is for families – the cost of petrol, hotels, food bill for parents, making memories – we would like to be able to help.”

Sebastian died on Sunday, January 28, after going downhill rapidly. On the Friday before his death, he had done one last ‘big shop’ at Tesco in Kettering and had enjoyed a ‘feast’ in bed with his mum and dad.

Rushed into hospital the next day, Sebastian passed away peacefully on the Sunday.

Fundraising for possible medical treatment and to support the family, the community in the local area and further afield were motivated to help ‘Team Sebastian’ as Gregg and Lindsay explored every avenue to help their son.

Advised by medical staff to ‘make memories’, the family made the most of every opportunity to go on day trips – pictures and videos taken of Sebastian from excursions have helped them as they grieve.

Gregg said: “In a way we have had a fantastic six months with him. A child with a critical illness is more than that, you have to live a lifetime of experiences in a short space. Looking at photos and videos has helped us.”

Their first ‘re-gifted’ donation has been to help Isaac Tilley from Kettering who has a funding page to help with equipment, adaptations, travelling and memory making.

The donation from Team Sebastian of £6,519 has boosted Isaac’s fundraising target to £40,000 – the initial target set by ‘Isaac's Journey Fighting Battens’ Go Fund Me.

Isaac has been diagnosed with Batten Disease, a form of childhood dementia which causes children to lose their mobility, sight, speech, memory and eventually their life.

Donating the money, Gregg and Lindsay advised the family to make memories and said: “In the week since we lost Sebastian we have been comforted by the amazing memories we were able to make in the past six months due to people's generosity and donations.

"It's not fair that children have to suffer like ours have but Sebastian would be happy knowing that Isaac can get lots of fun experiences under his belt.”

To help local children in the county who are receiving cancer treatments, all the proceeds from March’s Strictly for Sebastian dance event will be used to help a renovation project at Northampton General Hospital (NGH). Work to improve an outdoor area shared by Disney and Paddington Wards used by children has been on a wish-list for some time.

Sebastian had been treated at NGH where the county’s paediatric oncology team is based.

Lindsay said: “He absolutely loved it in the playroom. The staff were so kind and helpful. Hopefully what is given will be enough to move forward plans. It would be nice if there was a commemorative plaque to Sebastian.”

So far, at least £10,000 has been raised by the Strictly for Sebastian event that will take place at Wicksteed Park on Saturday, March 2. Gregg will still take on the role as compere.

The couple say they understand the financial hardship and strain families with critically ill children are under.

Lindsay said: “We’ve been lucky. Our employers have been incredibly understanding. We have supportive families. Over the past three and a half years Sebastian still grew. We had to buy more clothes as he was on different drugs so he would quickly grow out of things, we spent a fortune on shoes that he could wear when he had pains in his legs. When you have a child with a critical illness it costs an extra £750 a month on average.

"We think we can help.”

A mechanism to manage the remaining funds is being sought to allow donations to be made to local children and families.

Gregg added: “We want to find a way of helping others, not with one big donation to a charity, but helping families with costs.”