Two-year-old Calib Forsyth from Glenrothes in Fife is an independent little boy, despite his complex disabilities. He has a self-propelled wheelchair which he uses around his home and at the development centre he attends twice a week.
However, mum Sarah Forsyth says: “The wheelchair is perfect for Calib when he is in a restricted area – he is very independent and likes to go his own way. However, when we are out shopping, for instance, his independence can become a problem as he has no awareness of danger. In addition, there are many days when he just isn’t well enough to operate his wheelchair himself and its design means he doesn’t have the option to lie back and relax when he is tired.”
Calib has a diagnosis of Dandy Walker Syndrome and Hydrocephalus; he has regular hospital appointments, which have involved around 30 MRI scans, after which he is particularly fatigued.
Calib needs a specialist buggy with a recline facility which will also offer postural support to help keep him comfortable. He was previously provided with this equipment by statutory services, but was subsequently assessed as needing the wheelchair to help him gain some independence. Statutory services will not provide both items at the same time, so the original buggy was withdrawn.
Sarah added: “His wheelchair was judged to be age appropriate and it is great for his independence – when he is well enough to be independent. But about 70 per cent of the time he just isn’t well enough and it isn’t appropriate for his ability during these periods.”
She tried Calib with a standard buggy to use during his periods of poorer health, but, she said: “Although he is two years old, he is the size of a four to five-year-old and a standard buggy just isn’t big enough – he has particularly long legs which drag on the floor.”
The specialist equipment which best suits Calib’s needs costs £2,514, which prompted Sarah to turn to Newlife Foundation for Disabled Children.
Newlife is the UK’s leading children’s disability charity which has provided £40,114 in equipment grants for 21 children in Fife; Calib has previously received a specialist bed from Newlife through its partnership with Marks & Spencer.
But the charity is experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 – have shot up by 81 per cent. This is an average of 300 calls a week, with thousands more hits on the charity’s website https://newlifecharity.co.uk
“Because of the huge demand,” said Newlife CEO Sheila Brown, OBE, “we are calling on ‘local heroes’ to help us raise money to fund equipment in Fife. Newlife guarantees that 100 per cent of any gift or donation will go directly to support disabled children in the county.”
If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Any money raised in excess of Calib’s needs will be used to help other disabled and terminally ill children in Fife.
Sheila added: “Equipment ‘enables’. It can mean the difference between comfort and pain, engagement or isolation, freedom or a worsening condition. Therefore, our equipment grants are vital to so many children, offering practical support to families. Items can range from beds and buggies like this one for Calib to specialist seating and communication aids. Equipment costing from hundreds to several thousands of pounds really can revolutionise a child’s life.”
Pictured: Calib Forsyth, who needs your help.