A TERMINALLY ill tot who has up to 40 seizures a day is defying the odds six months after his family were told he had just days to live.
Jack Murphy was diagnosed with Menkes Syndrome at eight weeks old.
Due to his mother’s learning difficulties Jack, who is now 22 months old, has been cared for since birth by his aunty Becky Howe and her partner.
Becky, 33, of Bradley, said: “Jack’s condition is terminal and they said he wouldn’t live past six months.
“When he reached six months they said he wouldn’t make 18 and he is now nearly two so he is defying the odds.
“He can’t smile but he can respond to our voices and he still has his own personality. He loves his cuddles and to play in the bath. He has touched us in so many ways.”
To cope with the demands of Jack’s condition, Becky sought help from The Forget Me Not Children’s Hospice which is building a children’s hospice in Brackenhall.
Becky added: “His condition means he has degenerative muscle tone which means his body is all floppy. He can have up to 40 seizures a day.
“He can’t sit up like other children and has to have a specially adapted car seat otherwise we couldn’t take him anywhere.
“When he was born I was pregnant with our own child and we have two young children so the demands on the family were incredible.
“We couldn’t go anywhere as Jack needed constant care and this wasn’t fair on our children who still had all the usual demands on us.
“We were put in touch with The Forget Me Not Children’s Hospice in September last year and they helped us get our life back so we could function as a happy young family.
“We had got to the point where we couldn’t do anything – even going to the shops – and we didn’t have a minute to ourselves or even go out as a family.
“The hospice has been brilliant. We couldn’t ask for a better service. They give us respite care and come in for 24 hours when Jack is really ill during the night so we can still sleep to look after him in the day.
“They are also on call so whatever time of day it is we can ring and speak to someone for guidance.
“And when Jack does pass away we know that they will continue to support us and our family.
“Jack defying the odds is a miracle but the support they have given us has made it all possible.”
Hospice at Home service provides care for children, young people and families in their own homes.
The team provides planned home-based respite care, emergency respite care, 24 hour end of life care, symptom assessment and management, specialist palliative nursing care, emotional and psychological support, sibling support, parental and family support, bereavement care and support and complementary therapies.
To donate to The Forget Me Not Children’s Hospice http://www.forgetmenottrust.co.uk/fundraising/donate/online or in person at one of the five shops in Lindley, Brighouse, Holmfirth, King Cross and Heckmondwike.
Menkes Syndrome is caused by a defect in the ATP7A gene.
It affects about one in 100,000 newborns.
Children with Menkes Syndrome typically begin to develop symptoms during infancy and often do not live past the age of three.
The defect makes it hard for the body to distribute and absorb copper which means the brain and other parts of the body do not get enough copper.
Low copper levels can affect the structure of bone, skin, hair, and blood vessels and interfere with nerve function. Copper also builds up in the small intestine and kidneys.
Menkes Syndrome is inherited, which means it runs in families.
Symptoms include brittle hair, feeding difficulties, irritability, lack of muscle tone and floppiness (hypotonia), low body temperature, mental deterioration, rosy cheeks, seizures, skeletal changes.