Loui Legend Heath now has the specialised buggy he needs to carry all of his essential medical equipment when he goes outside. His mum Karly says it has “transformed” their lives.
Now his family are asking the people of East Sussex to help local children with disabilities or terminal illness who also need essential equipment.
The six-month-old baby from Brighton was diagnosed at birth with a rare condition that affects the bones and tissues of the face. As a result he requires a tracheostomy to breathe, a gastrostomy to obtain his nutrients and a bone anchored hearing aid to hear. Loui requires 24-hour care and lots of equipment to go with him wherever he goes including a suction machine, an emergency tracheostomy box, a feeding pump, a store of tracheostomy catheters and a nebuliser along with all the everyday baby requirements.
When Karly was pregnant, she bought a buggy, but it could not carry Loui and his ‘must have’ equipment safely. The specialist buggy that was needed could not be funded and they turned to Newlife Foundation for Disabled Children to fund the £1,015 purchase.
“Since Newlife helped us to get the Bugaboo donkey buggy, which is sturdy and strong with a side basket and spacious undercarriage where we can keep all Loui’s equipment, our lives have been transformed,” mum Karly said enthusiastically.
“We can now take him out without worrying whether the buggy will be able to take the strain and have the space to carry all his things. I no longer have to precariously carry some of it over my shoulder which was almost impossible to do along with actually caring for him and carrying out constant suctions of his tracheostomy when out and about.
“With so many things to worry about, to have one of these taken away has really helped and I now look forward to being able to take him out for walks each day.”
Right now there are five children in the East Sussex who urgently need equipment. Newlife Foundation, the UK’s largest charity funder of specialist equipment for children, needs £7,358 to help these children.
Newlife has helped 76 children in East Sussex through equipment grants and loans totalling £126,551, so the charity knows there is a very real need for a specific county fund. In this way it aims to help more children, more quickly.
The Newlife East Sussex Fund supports equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Vitally, the Newlife East Sussex Fund website – www.newlifecharity.co.uk/eastsussex – will enable local people to find out who needs help in their area right now and highlight the support the charity gives vulnerable families. It includes contact details for the Newlife County Liaison Team – telephone 01543 431 444 or email [email protected] – and shows specific ways people can help support children with disability and terminal illness and their families.
That might involve taking part in a local sporting challenge, give you information on how to organise a fundraising event – or even ask you to donate £5 today. Volunteers are also needed to help raise awareness of what we do and how we do it.
We hope that by launching the Newlife East Sussex Fund, children with disabilities or terminal illness in the county won’t have to go without the equipment they need for everyday life.
Newlife Foundation supports families in the East Sussex through a range of free services: Nurse-staffed helpline Equipment grants Emergency equipment loans Sensory and developmental toy ‘pod’ loans.
Pictured: Loui Legend Heath