Family fundraising for therapy after son born with rare form of cerebral palsy
8:30am Thursday 13th February 2014 in Penarth news
A PENARTH family are hoping to raise £50,000 for their son to undergo intense physiotherapy and muscle strengthening after he was born with a rare form of cerebral palsy.
Parents Fiona and Rod Smith were desperate to have a child and underwent three rounds of IVF in a bid to start a family.
After the first round of IVF Fiona became pregnant with twins, named Daisy and Matilda, but they soon discovered she had a condition called cervical incompetence and she suffered a miscarriage late in pregnancy in March 2011.
In a bid to improve their chances of having a baby they flew to America for Fiona to have a pioneering operation called transabdominal cerclage, but they suffered further tragedy when Fiona had another miscarriage following a second round of IVF.
At the third attempt their dreams finally became a reality when Fiona, 43, gave birth to Alfie Porter-Smith in May 2012.
Alfie, who now attends Hazelhurst Nursery in Penarth, was born five weeks early through an emergency Caesarean section and, after he was transferred from Royal Glamorgan Hospital SCBU to the larger neonatal unit in Singleton in Swansea 24 hours after he was born, spent the first two weeks of his life in hospital.
"Those first two weeks were a living nightmare," said Fiona.
"I couldn't believe that after everything, there was even a chance that we could lose Alfie. “The staff at Singleton Hospital were amazing, and we are so thankful that he pulled through."
It wasn't until several weeks later that Alfie's parents realised he wasn't developing as well as he should be and they took him to a doctor.
“Alfie was very floppy at birth, and we didn't realise at the time it would be an ongoing problem. We came home when he was two weeks old and lived in our own little bubble world, as first time parents do.
“It was only when the weeks went by, and he couldn't hold up his head that we realised it was something more significant."
At nine months old, Alfie was diagnosed with cerebral palsy. He is now 20 months old, has learned to sit unsupported, and even twists around on his bottom.
"Alfie is so amazing to be around, he is bright and intelligent and very happy. In fact, most people that meet him for the first time are shocked when we say he has CP. When he sits on the floor and plays with his toys, you would be hard pushed to distinguish him from any other child. It's only when you look a little closer, you might notice that he doesn't use his right hand, he can't sit back up if he falls over, he can't crawl, he can't stand and he can't walk."
"Most children with CP are very stiff and rigid, but Alfie is very limp and floppy.”
Fiona and 57-year-old Rod, a part time lecturer in astro physics at Cardiff University, have started a fundraising campaign to get more intense therapy for Alfie that will pay for advanced biomechanical rehabilitation (ABR), physiotherapy, occupational therapy, speech therapy and strengthening and conditioning coaching over the coming years.
"It's a little bit bitter sweet that we spent all our savings on the IVF treatment and the American operation to get Alfie here, now to wish that we still had those savings to pay for his therapy,” added Fiona.
Fiona, the treasurer of Penarth Operatic and Dramatic Society and director of this year’s pantomime, said: “When we are at home and it's just us everything is absolutely perfect. It doesn't really matter to us that he has cerebral palsy. We want to have the best for him and push him far, but the most difficult thing is when we are out with children that don't have cerebral palsy as it brings it home how far behind he is other children.”
She added: “He laughs, he plays, he smiles. He's such a little cheeky character. He's absolutely amazing.
“He is literally the best thing I have ever done. He's just so wonderful and hand on heart I love being his mother.”
Fiona, of Heol y Brenin in Penarth, added that her main concern about Alfie’s future was that he reached his ultimate potential and lived as normal a life as possible
“More than anything I want society to accept him and the more I can do for him to integrate him to society the better,” she said.
You can donate online via www.justgiving.com/walkwithalfie
Or you can donate via text. To donate £1 text WALF99£1 to 70070. (Texts can only be sent in the amounts £1, £2, £3, £5, or £10).
All monies raised will go to Tree Of Hope, who will ear mark the money for Alfie, and pay his therapy bills directly.
A fundraising quiz night in aid of Alfie will also be held on Friday, March 7, at 7.30pm at Penarth Conservative Club with teams of up to six people.
If you could help with fundraising the family can be contacted on: