Show your Support for a Contractor in Need

As most will be aware, as a contractor, putting the brakes on your business for a while will impose times of financial uncertainty and professional insecurity, but this is just what Paul, a contractor from Leicestershire, has done for his daughter.

When Paul and Carly Hadman welcomed their beautiful baby daughter, Effie, in June 2010, she seemed to be a perfectly healthy child.

When Effie reached two and a half years old, however, her parents began to notice that she seemed run down.

Within the next month, Effie started to suffer from seizures, enduring ten in one day alone.

In January of this year, Paul and Carly received the devastating news that Effie had Late Infantile Batten Disease, a rare genetic disease that affects just five children every year in the UK and presents a life expectancy of between five and twelve.

Batten disease means that Effie is missing an enzyme which naturally clears her cells of waste, and affects her ability to walk and talk. Eventually, the disease leaves children blind and in a vegetative state. 

“We were told there’s no treatment, there is no cure, but as parents you don’t believe that,” said Carly.

After scouring the internet for any signs of hope for their daughter, the determined couple came across a new medical trial at Evelina London Children’s Hospital on the Batten Disease Family Association (BDFA) website.

Three-year-old Effie has now been provisionally accepted as number ten of the new trial, which has only previously been tested on animals. Effie will have a cannula fitted to her head to allow the needed enzyme to be fed directly into her brain every two weeks for the rest of her life.

“We’re not just going to give up, we’ve got to give her every chance,” Carly asserted.

As a result, Effie, Paul, Carly and their young son George are all preparing to make the considerable move from Mountsorrel to London for Effie’s participation in the trial.

Baby George had a 25 percent chance of also having the disease, but has been given the wonderful all-clear news.

In a show of support, the couple’s friend, Gerry Lindup, has set up a charity page to help the family, intended to allow specialist equipment and days out for Effie.

Paul and Carly are hopeful for the future of their daughter, saying, “[The BDFA] have got a good idea that it will work, so there is some hope there.

“We’ve got to keep that positivity, not just for us but for Effie.”

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By:Sam Greenwell

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