Twins with a special bond but one cruel difference

By a cruel quirk of nature one twin suffered brain damage after birth which has left her unable to walk or sit up, and with delayed speech and development, while the other is a fit and healthy four-year-old.

“The cerebral palsy effects Charlotte’s entire body. She cannot sit or stand independently,” explains mum Radka. “She has about 20 words – one of which is Emily. She can count to ten and sometimes put two words together, so compared to other four-year-olds she is behind, but she understands everything and is developing all the time with the things she can do and she is an extremely happy little girl.”

Since she was eight-months-old Charlotte has travelled to the Czech Republic up to three times a year for a special, intensive form of therapy called Vojta, to help her.

The Vojta principle was developed between 1950 and 1970 by the neurologist Dr. Vaclav Vojta. It is one of the regular physiotherapy treatment programmes for children with impaired movement in many countries, especially in eastern Europe and it is spreading although it is not widely available in the UK.

In the Vojta method normal patterns of movement sequences, for example, reaching and grasping, standing up and walking, are not taught or trained as such. Vojta therapy instead stimulates the brain, activating “innate, stored movement patterns and reflexes” that are then “exported” as coordinated movements involving the musculature of the trunk and extremities.

Through repeated activation of these reflex-like movements, a certain degree of “freeing a switch” in the blocked network of nerves between the brain and the spinal cord often associated with cerebral palsy, is believed to take place.

“I am from the Czech Republic,” says Radka. “But the reason we go there for Charlotte is because we cannot find similar therapy here in the UK. There is one place in Oxford but it only offers a couple of hours a day. When we go to the Czech Republic it is far more intensive – from 8am to 1pm everyday for three weeks.

“Without it she would be much worse. She is now learning to feed herself, I don’t think she would have been able to do that without the therapy. She is continuing to develop all the time. She also has reflexology and oxygen therapy to help her brain.”

The children’s father Mark Wormald and Radka, who cares for Charlotte full-time, have to do the therapy with her every day. Charlotte has hypotonic cerebral palsy which means all her four limbs are floppy. Working with Charlotte aims to build up muscles in her arms and legs and try to give her some movement. It involves putting her into three positions on her tummy, back and side and carrying out a number of exercises which are repeated. “I work with her all the time, if we don’t do the exercises then I see a huge difference in her. She has been a bit poorly recently and so we didn’t do it for a few days and I could really tell. It really is very beneficial.”

The family is fund-raising for the treatment, which costs £3,000, and also for a special walking frame and wheelchair which will give Charlotte the independence she craves.

“She loves to walk but she can’t do so without being fully supported. As she is getting bigger it is harder and harder for me to support her. The frame would make such a difference to her. It would allow her to walk and stand unaided for the first time.”

Charlotte’s brain damage happened just weeks after thw twins were born at Airedale Hospital.

“My pregnancy had been fine until I was about 26 weeks pregnant when I started to bleed and the twins were delivered,” recalls Radka. “They were so tiny. Charlotte weighed 900g and Emily 835g.” Despite their size both twins seemed fine, but about a month after she was born Charlotte was fighting an infection.

“They told us that things were so bad that she was going to die,” recalls Radka. “But she is a real little fighter and eventually after three months in hospital she was allowed home, without oxygen which is pretty amazing.”

Once home in Menston, Radka and Mark were faced with caring for twins, one with serious disabilities.

“I don’t think it was that much more of a challenge for us when they were babies than for any new mum faced with twins. But as they have got older the challenges do change.

“They get on very well but you do worry about how you are going to give them love equally when Charlotte’s needs take up so much of your time. She is very demanding because of her needs; she cannot do anything about herself. Emily is very easy going and she never complains, but I suppose she has never known it any different. Charlotte takes up a lot of my time.”

Despite Charlotte’s severe disabilities she joined her sister in starting at mainstream Menston Primary School in September.

“They both love school. Charlotte only goes for two and a half hours at the moment but they will slowly start to increase that and she has three full-time support workers who take it in turns to help her. Emily is in a different class which I think is good for her, she needs to have her own space and not always be thinking of Charlotte.

“Charlotte is really enjoying it. She smiles every time she goes.” At the moment Charlotte has a specially adapted pushchair, but she is getting too big and so Radka is hoping with the fund-raising they may be able to buy her a wheelchair which will help her at home and school.

“Emily and Charlotte are great friends. They do have their moments like any sisters, but they are extremely close. We just want Charlotte to be able to have some independence.”

• Cerebral palsy is a general term used by doctors to refer to a set of neurological conditions that affect a child’s movement and co-ordination. Cerebral palsy is caused by damage to the brain, which normally occurs before, during or soon after birth and approximately 1,800 babies are diagnosed with the condition each year.

A concert is being held on Saturday, October 15 at the Glusburn Institute, Colne Road, Glusburn, near Keighley to raise money for Charlotte Blahova. Doors open at 7pm and a number of local bands have got involved to help the cause including The Assembly. Tickets are £6 and available on the door or from the box office on 01535 630223 or from www.glusburninstitute.org.uk