Family of terminally-ill boy left devastated
THE family of a terminally-ill boy is devastated after being told two more children have the same brain condition.
The parents of brave eight-year-old McCauley Riley have seen him deteriorate to the point where he cannot move, talk or speak.
Now his brother Cody, 13, and baby nephew Rory have also been diagnosed with incurable Adrenoleukodystrophy, or ALD.
Following the diagnosis McCauley’s parents Wayne and Catherine Riley are calling for all babies to automatically be tested for the condition at birth.
The couple said they are hoping a bone marrow transplant will give Cody and Rory a chance of a long and normal life as their conditions have been caught early.
Already bone marrow from his sister Chelsea has stabilised Cody’s condition and a transplant is also planned for five-month-old Rory.
However it is not a cure and it is not known how long the stabilisation effect will last.
The family were able to enjoy a family holiday with ‘Mac’ in Florida last year, where he swam with dolphins before the condition took away his mobility.
When they returned, tests carried out on the family showed Cody had the same genetic condition, which only affects boys.
The Riley’s 16-year-old daughter Jade also underwent tests with her brother and two sisters. The tests found that she was not only a carrier for the genetic condition, but that the child she was pregnant with was affected. Sisters Gemma, 25, and Chelsea, 16 do not carrry the gene.
A bone marrow match for five-month-old Rory has been found on the donor’s register, which can used to halt symptoms before they appear, usually at the age of two onwards.
Jade, 17, who lives with partner Drew Farquhar, 23, said: “It was a difficult time. A counsellor said it would be best to terminate, but I felt he deserved a chance. Knowing so early makes a huge difference.”
Doctors say little can be done to help McCauley as the disease has progressed to the point where it affects his brain.
Mum Catherine said: “Mac is still here with us, and he understands every word we say. People don’t understand how he can communicate with us when he has no speech or sight. I just tell them that we are his parents and we just know when he hears us and what he wants.
“We are glad for every minute we have with him.”
Dad Wayne said: “We take him out in his chair and it is hard when people stare. They assume he was always like this. If people are curious we would rather they asked.”
The genetic condition, which means McCauley has a life expectancy of months to a few years, affects one in 30,000 children in the UK. Cody has full mobility but tires easily.
Wayne said: “What gives us strength is that Mac never complains or gets upset. We don’t moan because he doesn’t.
“We don’t know what is going to happen or when, so we make every day count and this will be an extra special Christmas.
“The decorations went up early and they will stay up a month longer because my kids love Christmas. We will all be together as a family this year.
“When this happenend, I’d never heard of the condition, and hardly anyone you speak to has. They do loads of tests on new borns, and they need to do one for ALD.
“Initially Catherine was seen as an overprotective mother, but she pushed it and Mac’s diagnosis has given the other two a chance.
“We are just hoping something can be found to beat this thing. Even for Mac. We still hope for a miracle every day.”
ALD is an inherited recessive genetic disorder linked to the X chromosome. The disorder leaves the body unable to break down fat molecules, which build up and damage nerve cells in the brain and spinal cord.
ALD usually appears between the ages of four and eight. Those affected will usually become totally disabled in six months to two years.
The family are also raising funds for charity ALD Life at www.justgiving.com/McCauley-Riley.
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