A grandmother from Leeds has set up a national charity calling for improved screening for newborns, after her grandaughter died.
Pat Roberts, 63, and her whole family were devastated after baby Evie Beth Sugden died aged just 11 months from rare Krabbes Disease.
Now her charity Save Babies Through Screening Foundation UK, is calling for improved screening of newborns in hospitals.
Presently babies are only checked for five diseases at birth in the UK. In some states in America, more than 200 diseases are screened for.
Pat, of Guiseley, said her daughter Claire and husband Carl Sugden, had gone on to have two more children, but said: “The disease could have been detected at Evie’s birth if screening was carried out and treatment given to save her, but if left undetected, is it rare for children to survive.”
She said that the charity aimed to prevent the early death of children resulting from Krabbes and other leukodystrophies that are detectable at birth.
“We aim to promote the advancement of treatments for these diseases whilst providing support for families and children diagnosed,”
Pat is fast becoming a national spokeswoman on newborn screening and has recently met with the head of the National Screening Programme about improvements nationally.
She is also organising a national event at Westminster in April called “New Born Screening Saved My Life,” which is backed by Leeds MP Stuart Andrew (Cons Pudsey),
Pat added: “It is devastating to lose a new baby because no one can help. Raising money for research will give our children hope for the future.”