Rare con­di­tion means daugh­ter needs round the clock care

Rossendale Free Press - - Memory Lane -

THE lives of the par­ents of Emma Jones re­volve around their youngest daugh­ter.

Ev­ery morn­ing the alarm sounds at 5.45am and an­other ‘ground hog day’, as mum Michelle de­scribes it, be­gins.

Af­ter feed­ing and bathing rou­tines are com­pleted, Michelle drops Emma off at the day cen­tre close to their home in Rams­bot­tom, and dad Graeme, a self-em­ployed builder, goes to work.

But life is far from nor­mal for these par­ents – their daugh­ter is 23 years old.

Emma has a con­di­tion called Retts syn­drome, a rare ge­netic dis­or­der which af­fects brain de­vel­op­ment.

Around one in 12,000 chil­dren are af­fected, and al­most ex­clu­sively girls.

“Emma was born and ev­ery­thing was fan­tas­tic, we had a gor­geous lit­tle girl,” said Michelle.

“She was about 14 months old when we no­ticed some­thing wasn’t right.

“She wasn’t mak­ing any at­tempt to crawl or to walk. She stopped rolling over and her hands started to clench.

“The skills she had de­vel­oped were then lost, which is part of a re­gres­sion pe­riod, and she was left as she is to­day.

“Her body is the size of a 23 year old, but she still has the mind of a baby so we’re al­ways in baby mode.”

The con­di­tion has no known cure and life ex­pectancy can be into the for­ties.

Emma can­not walk or talk and has had spinal surgery, a hip re­moved, and has os­teo­poro­sis.

“Eighty per cent of her time she’s smil­ing and ●● Graeme and Michelle Jones with daugh­ter Emma at Fran­cis House con­tent,” said Graeme.

“The other time she can be in hor­ren­dous pain.”

When Emma was four years old the fam­ily were re­ferred to Fran­cis House Chil­dren’s Hos­pice, and for nine­teen years they have re­lied on them for respite care and sup­port.

As more chil­dren with life-lim­it­ing con­di­tions are sur­viv­ing into adult­hood, the hos­pice cares for more than 110 young peo­ple who are over 16 years of age in Fran­cis Lodge in Manch­ester, a spa­cious seven bed­roomed wing for young adults. A high level of clin- ical care is pro­vided in age-ap­pro­pri­ate sur­round­ings that in­clude mu­sic, gam­ing and movie rooms.

“We leave Emma here and she has one stay for five nights and an­other big stay of nine nights,” said Michelle.

“We know when she comes here she’s get­ting the one to one care she needs that she doesn’t get any­where else.

“Now Emma is older we can have a week in the sun and it’s ab­so­lutely fan­tas­tic. If it wasn’t for Fran­cis House be­ing here we wouldn’t do that be­cause we wouldn’t feel re­laxed leav­ing her.

“Com­ing here gives us and Emma a real break.

“I’ve never been com­fort­able with hav­ing peo­ple com­ing into the house to care for Emma, when she’s at home I care for her my­self.”

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.