Stevenage parents' desperate appeal to raise funds to help twins walk
PUBLISHED: 08:30 10 July 2018
An appeal to raise money for private medical treatment to give seriously ill twins a fighting chance of ever walking has raised more than £15,000 so far.
Stevenage brothers Leonard and Raphael Chialva are monochorionic-monoamniotic twins, which means they shared the same placenta and chorion and were in the same amniotic sac in the womb. It is a very rare condition, only occurring in about one per cent of all twin pregnancies.
Leonard and Raphael were born 14 weeks premature in December 2016 and have been fighting against the odds ever since.
They were only 1kg at birth and have had heart problems, chronic lung disease and necrosis of the bowls and are unable to speak or walk. One of the twins also wakes up every hour, every night, due to cramping.
Their parents, Petra and Thomas, are doing all they can to help their 18-month-old boys.
Thomas said: “They have pulled through all of this, and some more, but unfortunately they have now been diagnosed with cerebral palsy. If we do nothing they might never walk.
“We are already doing two different physiotherapy methods for their development, but we need to get them into a specialised centre for the cerebral palsy.
“The specialist treatment is costing us £4,000 a go and we have been told we need two or three sessions a year for two years.”
He continued: “From the very first scan the problems and stress started for us. As monoamniotic twins, the odds of losing the babies before birth were high. They shared the same placenta and amniotic sac, so their cords were tangled.
“From week 20 we had to go check every week with a scan that they were still alive.
“They were born at week 26 through an emergency caesarean, with birth weights of 1.035kg and 1.085kg.”
Leonard and Raphael were transferred to the Neonatal Intensive Care Unit at Luton and Dunstable University Hospital, where they stayed for a month.
Petra and Thomas were told there was a high chance that at least one of the twins would die, and they tried to prepare for the worst.
The boys were then transferred to the Special Care Baby Unit at Stevenage’s Lister Hospital, where they stayed for 103 days.
Thomas said: “They had a hole in the heart, bleeding on the brain, a collapsed lung, necrosis of the bowls, lung infections... The list goes on and on.
“They came home at different times, but both came home with oxygen support – Leonard for three months and Raphael for five months.”
When Leonard and Raphael were seven months old, Thomas and Petra realised they were not developing and progressing as expected.
Thomas said: “With the NHS attitude being ‘wait until they are two years old and they will catch up, and if they don’t we will deal with it then’, we decided to take things into our own hands and took the twins to Slovakia, which is Petra’s home country, to get them checked out – and we started a physiotherapy method called Vojta therapy.
“It is a very intensive therapy which parents have to do at home four times a day. The therapy teaches the child to use muscles not previously used and works with muscle reflexes.
“The therapy worked really well until they were 14 months old, but then we hit a wall and could not go any further, so we pushed for some check-ups with the NHS.”
After various tests, the twins were diagnosed with cerebral palsy. Bleeding on the brain has left scar tissue which disturbs signals to the lower body muscle.
Cerebral palsy is a group of permanent movement disorders and symptoms include poor coordination, stiff muscles, weak muscles and tremors.
Thomas explained: “At this stage, they can both only commando crawl.
“They do not speak and Leonard is cramping up at night and so he wakes up every hour.
“As you can imagine, it’s exhausting for everyone.
“The treatment in the UK is not readily available and so a month ago we decided to set up a JustGiving page to help cover the costs of private treatment abroad.
“We have found a leading European centre in Slovakia and the twins are already out there for their first session of treatments.
“There are promising signs already, but it will be a long haul until we know whether they will eventually be able to walk, which is why we are asking people to continue to support our appeal, so the twins can keep receiving the treatment.”
To donate to the appeal, see justgiving.com/crowdfunding/thomas-chialva.