Take part in the Leamington Spa Wolf Run on Sunday 7 September and raise money to help children like local one-year-old Edward Jakes.
Edward, who lives in Warwick, has Global Developmental Delay as a result of a rare chromosome abnormality and has recently been diagnosed with Epilepsy in addition to muscle tension, which affects his movement. With Edward also frequently needing oxygen, getting out and about using a standard pushchair was becoming more and more daunting for the family.
Dad Nicholas Jakes said: “With a regular buggy there was no support for Edward’s arms, which stick out and made him uncomfortable; he couldn’t be properly positioned and there wasn’t anywhere to safely store his oxygen tank while we were on the move.”
Local wheelchair services offered the family £1,300 towards the cost of a specialist £3,542 buggy – so Edward’s parents turned to leading UK children’s disability charity Newlife Foundation for help with funding. The charity has provided 142 Equipment Grants totalling £184,393 for disabled and terminally ill children in Warwickshire. Across the UK, Newlife Equipment Grants expenditure stands at more than £11million.
Nicholas Jakes said: “Having the right equipment for Edward has given us the confidence to take him out more. Its suspension means we can push him over almost all terrain from rough ground to pavements, and Edward is always comfortable.
“The buggy offers additional support around his head and hips and under his arms so he is in the correct position, not slouched in the seat. Edward is often on oxygen so having a dedicated place on the buggy to put the oxygen cylinder means we can store it and forget about it. The seat has a swivel feature, so we can keep a close eye on him and it can be used as a chair when we go out to eat. Restaurants don’t have highchairs appropriate for Edward and this means he can be included in more family activities.
“I think that sometimes Edward can feel isolated; the more included he is the more he laughs – and he has a lovely little chuckle – so we can tell from his reactions that he is enjoying himself. That is really important to us.”
And with the equipment folding flat to form a changing platform, it also means the family doesn’t have to worry about staying close to baby changing facilities.
Nicholas added: “I feel quite proud wheeling Edward around in the buggy – and because it is such a safe environment for him, his four-year-old sister Lucy can help out by fussing over him and pushing him around the garden.”
Newlife CEO Sheila Brown, OBE, said: “With statutory services across the UK implementing continued budget cuts, we expect to see more and more families turn to Newlife Foundation for help. That’s why we’re appealing for ‘local heroes’ to come forward and donate or fundraise to help a disabled or terminally ill child in their county.”
If you have already signed up to the Leamington Wolf Run and would like to raise money for Newlife – or Edward’s story has inspired you to now give it a go, call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email [email protected]. To register for the event, go to: https://www.thewolfrun.com/entry/
Sheila Brown said: “This is a great opportunity to get together with a group of friends and take on a challenge with a difference. There are lots of fun obstacles like slides and mud pits and Newlife supporters who took part in the event last year all had a great time.”
She added: “Every penny that people donate goes directly to funding vital equipment. This could be a wheelchair or buggy for mobility, a specialist bed or car seat to keep a child safe or a communication aid so they can tell their parents when they are hungry or in pain. And you can ring-fence your fundraising or donation to be spent in the county of your choosing.”
To find out more about the range of equipment grant and loan support services offered by the charity, call the Newlife Nurse Helpline on freephone 0800 902 0095 or email [email protected].
Pictured: Edward Jakes, who is 16 months old.
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