A specialist cot bed means a four-year-old girl from County Down with a rare form of Epilepsy can be kept safe while allowing her parents to help her quickly in the night should she need them.
Tessa Martin is sleeping in a standard cot, which she has outgrown and there is a chance she may be able to climb out. This has prompted her parents to move it against a wall of their Newtownard home and raise the height of the sides – however this temporary measure makes it difficult for them to reach Tessa.
Diagnosed with a learning difficulty and Dravet Syndrome – which means she has epilepsy caused by a rare brain disorder – Tessa has regular seizures. She is tube fed and communicates in single words. If she is supported she can sit and also walk a few steps and she can crawl, climb and lift herself up.
She has insomnia and her sleep patterns are affected by her seizures, which means Tessa is often awake in the night and will move around, attempting to climb out of the cot and grab items outside of her reach, putting herself at risk of falling.
Dad Darren said: “We have made the side taller, but there’s no door on it and she’s quite heavy, so it’s not easy for any of us to lift her in and out, including her grandparents who help look after her. Her seizure pattern has also changed and she is having more seizures during the night. The concern is we won’t be able to get to her when she needs us.”
Mum Keren added: “I know I wouldn’t be able to lift her out of the cot on my own.”
The specialist cot bed for Tessa, which statutory services can’t provide, will give her a safe place to sleep and means her parents could easily get to her during a seizure. However, the £8,372 cost of the equipment prompted them to turn to leading UK children’s disability charity Newlife Foundation for help.
The adjustable height feature of the cot will reduce the risk of back injury to her parents and hopefully enable Tessa to get in and out of it herself.
Her parents will also be able to administer her tube feed easily in the bed as it can be angled into a suitable position and when it is raised it will also make changing Tessa much easier.
Keren said: “The new cot will have a big impact on all areas of life for us.”
Newlife has funded 18 Equipment Grants for children in County Down in 2014, totalling £43,824. With applications soaring, the charity is increasingly looking to ‘local heroes’ to help children in individual counties. Newlife guarantees that 100 per cent of all monies donated or fundraised in County Down can be ring-fenced to specifically provide equipment for disabled and terminally ill children within the county.
Newlife needs £8,282 to fund the cot bed for Tessa. If you would like to raise money to help, the Newlife Community Fundraising Team can be contacted on 0800 988 4640 (free from UK landlines). Any monies collected surplus to requirements for Tessa would be used to provide specialist equipment for another disabled or terminally ill child in County Down.
Pictured: Tessa Martin