Club's support for tot who defied medical expectations
Updated 1:46pm Friday 11th July 2014 in News
A BARRY Rugby Club fundraising event is set to assist a Barry youngster who has defied medical expectations - following her family’s push with her development.
The club members are going all out to help Laura and Ashley Mellens, of Y Rhodfa, Barry, raise funds for their four-and-a-half year-old daughter Blisse, who as a baby, was diagnosed with the rare brain disorder Periventricular Nodular Heterotopia and Polymicrogyria - a condition characterised by abnormal development of the brain before birth.
Mum-of-two Laura only knows of one other case in the UK with a few more in the USA.
But Blisse’s family have refused to accept any negative views on the youngster’s health and have been continually fundraising to provide her with equipment that can challenge her and help her progress.
The Ysgol Erw'r Delyn pupil, who also attends Ty Hafan, has so far been assisted by a sensory room, toys, lights and other specialist equipment – all self-funded with the help of supporters engaging in fundraising activities.
Laura, 29, said: “Blisse still has seizures, but recently the big tonic clonic seizures have just disappeared, which means her development has come on so she’s able to sit up. She speaks with her eyes, she can roll and switch and stand aided. She has abnormal movements which look like seizures – so she’s on a new drug for that – but she’s doing really well.
“We are just enjoying her, because we don’t know how long it will last and hopefully she will have a good winter.
“The doctors are flabbergasted. They are amazed at her development. The neurosurgeon says ‘go and enjoy it because always remember the seizures could return'.
Blisse suffered ill health during the winter, as a result of coming into contact with bugs, but the resilient youngster returned home to her family on Christmas Eve.
Her family, including elder sister Neveah, 10, are hoping to provide new items which include padding, a pea pod suitable for her size, a Firefly GoTo Seat, a Big Mac switch for communication.
Laura added: “She’s smiley and her favourite thing in the whole world is when you fake a sneeze. She thinks it’s hilarious. When we go for a photo shoot I’m shattered after an hour.
“She’s cheeky and she can say no to you – it’s all in her eyes. No-one thought she would sit up. She’s learnt in her own way. Every time she does it, it’s still like the first and we go ‘wow’. I do think she’s going to do it. She’s shocking us.”
Laura and Ashley, 32, thanked all family, friends and supporters who have and continue to support them.
Make A Wish has arranged a family holiday in Majorca, Spain, in a villa suitable for Blisse’s needs and the Butterfly Wishes Network has enabled the family to have a lasting photographic record.
Search Blisse’s Journey on Facebook.
The Family Fun Day, in aid of Blisse, will take place at Barry RFC, Merthyr Dyfan Road, from midday to 6pm on Saturday, July 19.
There will be bouncy castles, stalls, face painting, table top sales, music, refreshments and mobile photo shoots with the Bombettes taking on the Randomers on the pitch at 3pm.
Any raffle donations would be appreciated.
For information, email email@example.com or call 01446 734806.