An employee at a Birmingham engineering company whose three-year-old daughter has a fatal medical condition for which there is no known successful treatment is receiving support from his work colleagues and the company.
In a short time a fund launched by hydraPower-dynamics and its employees at their works in St Marks Street, Ladywood has exceeded its target of £5,000 and is now touching £6,500.
Caitlin Powell, the daughter of Ben and Emma Powell, was diagnosed in March with Sanfilippo Syndrome, which affects one in 25,000 children and cannot be regressed.
But her parents and Caitlin’s sister Chloe are determined that she should have some pleasure and happiness in her life as the illness begins to take a grip on her body’s functions.
Mr Powell, aged 31, is a tube administration manager at the firm, which is a specialist manufacturer in hose and tube assemblies, surface coating equipment and aircraft test equipment, said he and his wife were grateful for the support they had received.
He said: “The public’s response to Caitlin has been amazing. We set up a website – www.Caitlinsdream.com – and we suddenly moved up from 500 hits in total to 25,000 and then 48,000.”
“We are getting a blog on the site so that we can tell Caitlin’s story and let people know how the donations they have sent in are being used,” he added.
Paul Ward, hydraPower-dynamics’ production manager, who is handling the donations said the initial target had been to raise £5,000 but the publicity had enabled this to be exceeded.
He said the firm was going to be doing its own fundraising and was confident that it could achieve £10,000.
Some of the money will be used to help Caitlin and her family have special days out including a trip to Disneyworld in Orlando which she has asked to see.
“The money will also be used to create a special room with sensory play equipment with light and sound in it and touchy feely objects. That is something children with this specific condition enjoy. They do not like the dark,” said Mr Ward.
Mr Powell said: “The time we have left with Caitlin is precious and supporters at work and our family members are raising funds to ensure that we have some happy memories of times shared with Caitlin.”
Special requirements are needed to care for Caitlin, who is expected to live no longer than 12 years old, and the family have had to sell their house in Culmington Road, West Heath, and apply for a council tenancy which they have now obtained.
This enables the family to concentrate on Caitlin’s needs to give her a better quality of life and care and remove the worry about maintaining mortgage payments which have become a burden on the family.
Caitlin does not have the essential enzyme that breaks down strings of heparan sulfate, a complex body sugar. Instead it accumulates in the brain, body cells and tissues causing progressive damage. The storage process affects the child’s appearances, bodily functions and development.
Eventually, the build-up of the condition causes hyperactivity, sleep disorders, loss of speech, mental retardation, dementia and finally death.
“We have been told that Caitlin will move into a stage where she starts to cry for no apparent reason and her limbs will become more painful. She can speak a few words but in time she will lose her speech. The situation will get worse for everybody as her condition worsens,” said Mr Powell.
Caitlin’s website explains her condition and reports on the fundraising.