Mum plans tragic tod­dler’s legacy

Rochdale Observer - - FRONT PAGE - Da­mon.wilkin­ @Da­monWilkin­son6

ABEREAVED mum whose tod­dler died from a ge­netic ill­ness is chan­nelling her grief into help­ing the par­ents of other dis­abled chil­dren.

Josh Kelly was just 15-months-old when he died last month from a mi­to­chon­drial dis­ease.

But Josh’s mum Ca­role is de­ter­mined to cre­ate a legacy for her son by set­ting up a char­ity to run play ses­sions for tod­dlers in her home town of Rochdale.

Ca­role, 33, of Wardle, first be­gan plan­ning the Jolly Josh play­group while Josh was still alive after dis­cov­er­ing there were no groups in the area for dis­abled young­sters un­der four.

And now the pri­mary school teacher, who also has a daugh­ter, So­phie, three, with her ar­chi­tect hus­band James, 31, is de­ter­mined to push ahead with the plans

She said: “You have two op­tions: you ei­ther don’t get out of bed on a morn­ing or you find a fo­cus.

“My fo­cus is now So­phie and Jolly Josh.

“My orig­i­nal plan was that Josh would be here to ben­e­fit from the group, but now it will be his legacy and I am de­ter­mined that other par­ents and chil­dren will ben­e­fit from it.”

The first signs that Josh was ill came when he was just four months old.

After a bout of bron­chi­oli­tis he be­came very poorly, lost the strength to hold his own head up and in Ca­role’s words ‘re­gressed to a new­born.’

He was even­tu­ally re­ferred to spe­cial­ists and un­der­went a se­ries of scans and tests which revealed he had suf­fered ex­ten­sive brain dam­age.

Re­mark­ably Josh fought back and re­gained a lot of the abil­i­ties he had lost, such as sit­ting up.

But even­tu­ally the ill­ness took over and his body be­gan shut­ting down.

He be­came mal­nour­ished be­cause he was un­able to keep food down, of­ten be­ing vi­o­lently sick sev­eral times a day, and had to be fed through a tube.

Trag­i­cally in May Ca­role and James were told Josh’s ill­ness was ter­mi­nal - it was the same type of dis­ease which claimed the life of Char­lie Gard, the baby whose fate was the sub­ject of a pro­tracted court bat­tle and made head­lines around the world ear­lier this year.

The cou­ple im­me­di­ately set about ‘mak­ing as many mem­o­ries as we could’ and within a fort­night they were mar­ried at the Pea­cock Room in Bam­ford with Josh by their side.

Ca­role said: “We wanted to make as many mem­o­ries as we could.

“I fin­ished work and con­cen­trated on spend­ing as much time as pos­si­ble with Josh.

“We tried to carry on as nor­mal and take Josh ev­ery­where we could. Look­ing back at the pho­tos of our wed­ding now it’s ex­tra spe­cial know­ing Josh was there.”

In Au­gust the whole fam­ily went to Wem­b­ley to watch James’ beloved Wi­gan War­riors take on Hull FC in the Rugby League Chal­lenge Cup fi­nal.

It was to be their last day out to­gether.

On their re­turn home Josh’s con­di­tion de­te­ri­o­rated rapidly and he was taken into De­rian House chil­dren’s hos­pice where he died, on Au­gust 27.

Ca­role said: “Josh was amaz­ing. He was just so happy and al­ways smil­ing.

“The re­ally tragic thing was that to­wards the end the ill­ness took his mus­cle strength and he couldn’t smile, he couldn’t cry. He com­mu­ni­cated through his eyes. He just fought so much, he never gave up. Right up to the very last day he never stop fight­ing, he never stopped try­ing.”

Now Ca­role is de­ter­mined other par­ents will ben­e­fit from the play ses­sions.

Ca­role said: “I hope Jolly Josh will make a mas­sive dif­fer­ence.

“Just meet­ing other par­ents who know what you’re go­ing through is a mas­sive help, just to get that sup­port and know you are not on your own is mas­sive.

“It is hard enough get­ting out of the house with a child, but with a dis­abled child it is even harder. I have an amaz­ing fam­ily and an amaz­ing sup­port net­work around me and some days I found it be­wil­der­ing. There are lots of peo­ple don’t have that sup­port.”

Ca­role and James also said they would like to send their ‘heart­felt and sin­cere grat­i­tude to ev­ery­one who has sup­ported us dur­ing the past year’ in­clud­ing Dr Vas­sallo and the team at Ward 78, Manch­ester Chil­dren’s hos­pi­tal, Dr Broom­field and the ge­net­ics team, health vis­i­tor Alex Lai­dler, consultant pae­di­a­tri­cian Dr Levy, com­plex care spe­cial­ist Anna Oddy, the com­mu­nity nurses and Josh’s key play worker Jackie, De­rian House Chil­dren’s Hos­pice and Mrs Fierro at Spring­side Spe­cial School.

Jolly Josh is await­ing char­i­ta­ble sta­tus, but the first ses­sion takes place on Wed­nes­day, September 27, from 1.15pm to 3.30pm at Spring­side School, on Al­bert Royds Street in Rochdale.

A weekly pro­gramme of ses­sions which will be at­tended by health spe­cial­ists has been planned un­til Christ­mas.

For more in­for­ma­tion search for ‘Jolly Josh’ on Face­book.

●●Ca­role Kelly with Josh, hus­band James and daugh­ter So­phie

●●Josh Kelly was just 15 months old when he died in Au­gust from a mi­to­chon­drial dis­ease

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