Real life

She al­ways looked out for oth­ers, even pro­tect­ing them from bul­lies, so when UK-based Julie Al­li­s­tone’s young daugh­ter Jade started com­plain­ing of be­ing ill she hoped it wasn’t any­thing too se­ri­ous, the mother tells Colin Drury

Friday - - Contents -

A mother shares her painful story of los­ing her teenage daugh­ter to a heart con­di­tion.

Julie Al­li­s­tone’s nurs­ing instincts meant she was un­der no il­lu­sion. She was well aware the chest pains her youngest daugh­ter Jade had been suf­fer­ing from could be se­ri­ous. But on a bright morn­ing, as Julie awaited the re­sults of hos­pi­tal tests along with the 11-year-old – an ap­par­ent pic­ture of health – even she could have no inkling of the news that was about to turn the whole fam­ily’s world up­side down.

“As soon as we walked in the doc­tor’s room, I knew it wasn’t good,” she says. “The whole at­mos­phere was wrong. We sat down and it was worse than I ever thought.”

Jade, they were told, had just months to live. The pains were be­ing caused by a heart de­fect, called hy­per­trophic car­diomy­opa­thy, which could re­sult in her col­laps­ing any minute. The rare con­di­tion – oc­cur­ring when the heart mus­cle thick­ens and stops blood be­ing pumped around the body – is so deadly that, for most peo­ple, the first time any­one has any idea they have it is when they sud­denly die.

“It was ut­terly dev­as­tat­ing,” re­calls Julie. Jade, as it turned out, would defy doc­tors. Thanks par­tially to a heart trans­plant and par­tially to her own sheer de­ter­mi­na­tion to keep go­ing, she lived for almost four more years. She passed away at her home in East­bourne, on the south coast of Eng­land, just last month.

But be­fore she did so, she met Pro­fes­sor Maha Barakat, who was rep­re­sent­ing Her High­ness Shaikha Fa­tima Bint Mubarak Al Nahyan, Chair­woman of the Gen­er­alWomen’s Union, Supreme Pres­i­dent of the Fam­ily De­vel­op­ment Foun­da­tion and Pres­i­dent of the Supreme Coun­cil for Moth­er­hood and Child­hood.

The Shaikha’s gen­eros­ity will of­fer hope to chil­dren in a sit­u­a­tion sim­i­lar to Jade’s in the fu­ture.

Jade was just nine years old when she first com­plained of chest pains. By that time, many of the char­ac­ter­is­tics that would de­fine her were al­ready in place. “She was al­ways think­ing of oth­ers,” says Julie, 57, a sin­gle mother who adopted the young­ster and her older sis­ter Dani, now 19, when Jade was just eight months old. Julie has one other child, 32-year-old Chloe.

“Jade never, even from an early age, put her­self be­fore any­one. She was al­ways pos­i­tive, al­ways bright, with lots of friends. And she would al­ways stick up for peo­ple. If any­one was be­ing bul­lied at school, Jade would be the one to step in…

“She could some­times be stub­born but she was grow­ing into the kind of young woman any mum would be proud of. She was a joy to be around. I re­mem­ber be­fore she passed away she said, ‘There’s so much I want to do’ – get mar­ried, have her own chil­dren, be­come a teacher, and I think she would have done it too.”

Doc­tors ini­tially said the chest pains were noth­ing to worry about but 18 months later, when Jade was 11, Julie – a nurse – saw her strug­gling while play­ing ten­nis.

“I re­mem­ber see­ing her lean­ing on her racket out of breath half­way through the game,” she says. “It was the ex­act same po­si­tion I’d seen

pa­tients suf­fer­ing a car­diac ar­rest go into. They lean for­ward to re­lieve the pain in their chest.

“I went over to her and she said, ‘It hurts, Mum,’ and I re­mem­ber just telling her, ‘Come on, we’re get­ting you to hos­pi­tal’.”

This time doc­tors at East­bourne Dis­trict Gen­eral in East Sus­sex found Jade had suf­fered an is­chaemic at­tack, some­thing that oc­curs when blood flow from the heart is dis­rupted. Fur­ther anal­y­sis – this time car­ried out at St Thomas Hos­pi­tal in London – re­sulted in the dev­as­tat­ing news that, with­out in­ter­ven­tion, she had just months to live.

She had been di­ag­nosed with hy­per­trophic car­diomy­opa­thy, which is when heart mus­cle thick­ens around the lower cham­bers. Why ex­actly this hap­pens or what causes it re­mains un­clear but, over time, the thick­ened mus­cle blocks blood be­ing pumped around the rest of the body.

“We were told she could drop down at any minute but that there was an op­er­a­tion that might keep her alive – a heart trans­plant. But then we were told that trans­plants could only hap­pen if a donor with the right kind of heart was found. Jade was still a child so some adult hearts may have been phys­i­cally too heavy for her. And even if they found one they thought her body would ac­cept, there was no guar­an­tee the heart would make it to the op­er­at­ing the­atre in a con­di­tion that could be used. Even if it did, there were so many com­pli­ca­tions with the trans­plant it­self, that there was a chance Jade might not pull through.

“It was ag­o­nis­ing re­ally. You’re sud­denly in a sort of limbo, just hop­ing and pray­ing that a heart is found and that it’s your child that gets it. And you’re hop­ing that in the mean­time, she’ll be OK. You have no idea how long it will be, but you’re told not to leave the area and to be ready to drop ev­ery­thing and get straight to the hos­pi­tal be­cause, ob­vi­ously, once they have a heart, the op­er­a­tion needs to hap­pen straight away.

“How did Jade feel about it? I think she was rel­a­tively calm. We’d not re­ally gone through the risks with her be­cause she was so young. I told her that they were go­ing to find her a new heart and after that she’d be able to play all her sports again like she used to, and I think she was just look­ing for­ward to that.”

In the end, it took just a few weeks from the di­ag­no­sis – and roughly two months after that ten­nis match – be­fore a phone call punc­tured the si­lence in the house at 3am one day in Fe­bru­ary 2011. It was from London’s Great Or­mond Street Hos­pi­tal.

“They said ‘We have a heart for Jade’,” re­calls Julie. “I was still half-con­scious so all I said was, ‘Oh right, thank you’ and it was only

‘It was pure re­lief… When she first woke up and smiled at us, it was one of the best feel­ings’

as I was wak­ing the girls up – Jade and Dani – that it re­ally hit me what was hap­pen­ing.

“I went into Jade’s room and told her, and she said, in that way young peo­ple do, ‘Re­ally? At 3am?’”

An am­bu­lance picked them up within the hour.

“I re­mem­ber when we got to hos­pi­tal, and she was ready for the­atre, I just said ‘We’ll be here wait­ing for you when you get out’, and I took a long look at Jade, pray­ing she’d be okay.

“Dani and I sat in a café for a while, in a daze.”

The heart it­self, they would later learn, had trav­elled fromWales – although no other de­tails were given. The hours passed slowly un­til, at 3pm, medics ar­rived with good news. The eight-hour op­er­a­tion had gone well. Jade was in in­ten­sive care, and if she sur­vived the next 24 hours, and then the next three months, there was a good chance she would live a nor­mal life.

“It was pure re­lief,” says Julie. “We went to see her but she was un­con­scious for two days. When she first woke up and smiled at us, it was one of the best feel­ings.

“The funny thing was that she was al­ways very proud of her scar, which ran right down her chest, almost from her neck.”

For three months after the op­er­a­tion, she had to be kept away from large groups of peo­ple be­cause medicines de­signed to make sure the body didn’t re­ject the heart also weak­ened the im­mune sys­tem. Con­tact with mi­nor colds and flu could have been deadly. As such she was kept out of school at first.

“But once she started go­ing back… you can’t say things were ever nor­mal be­cause you have to be so care­ful for a year – she couldn’t do stren­u­ous ex­er­cise or sport – and we still had reg­u­lar doc­tors ap­point­ments, but things were look­ing up,” says Julie. “She was back to her old smil­ing self.”

But things had started to de­cline again by the time Jade met Prof Maha this year. The young­ster was read­mit­ted to Great Or­mond Street in the sum­mer, not long be­fore it was an­nounced that Shaikha Fa­tima was to give some Dh373 mil­lion to the fa­mous hos­pi­tal.

The money will go to­wards build­ing the world’s first cen­tre ded­i­cated to pae­di­atric re­search into rare ill­nesses. In essence, it will al­low doc­tors to bet­ter un­der­stand how to

treat young­sters such as Jade.

“The most im­por­tant work that we can un­der­take as a global so­ci­ety is to im­prove the health of fu­ture gen­er­a­tions so that com­mu­ni­ties can thrive and grow,” Shaikha Fa­tima said at the time of the an­nounce­ment. “To reach this goal, we must form col­lab­o­ra­tive part­ner­ships that have the po­ten­tial to ben­e­fit all chil­dren. We are hon­oured to support the mis­sion and work of Great Or­mond Street Hos­pi­tal.”

The do­na­tion was given in recog­ni­tion of the hos­pi­tal’s abil­ity to lead ground­break­ing re­search, but also in ac­knowl­edge­ment of how it has pro­vided treat­ment for chil­dren from across the globe – in­clud­ing some 750 from the UAE over the past four years.

The new cen­tre is even­tu­ally ex­pected to bring hun­dreds of clin­i­cal staff and re­searchers to­gether, where they will see pa­tients and ac­cess state-of-the-art lab­o­ra­tory fa­cil­i­ties un­der one roof.

The gift, said Baroness Black­stone, chair of Great Or­mond Street Hos­pi­tal, was “truly trans­for­ma­tive.

“This fa­cil­ity will be a cen­tre of ex­cel­lence for trans­la­tional re­search and a bea­con of hope for chil­dren with rare dis­eases around the world.”

Jade her­self had been read­mit­ted in June this year – almost three­and-a-half years after her trans­plant – when it be­came clear her body was re­ject­ing the new heart. Early signs the op­er­a­tion had been a suc­cess proved a false dawn, and com­pli­ca­tions soon arose. Doc­tors dis­cov­ered the teenager’s an­ti­bod­ies were at­tack­ing the or­gan, one of the common risks in­volved in the process. A spell of chemo­ther­apy didn’t solve the prob­lem. By this sum­mer, it had be­come clear the new heart was now dam­aged beyond re­pair. The fam­ily was told she’d need a new trans­plant.

“Be­cause it was her sec­ond time, it made the chance of find­ing another heart so much harder,” says Julie. “The doc­tor told me that there were at least 250 peo­ple ahead of her, and they hadn’t had a new heart come in for 10 weeks. It was bleak.

“By that point, I’d pre­pared my­self for the worst. There were no other op­tions. Jade, who was now 15, needed a new heart and there weren’t enough com­ing in. It was heart­break­ing. We were help­less. Of course we wanted to fight but there were no other av­enues to go down but wait.

“Jade re­mained so pos­i­tive through­out, though. She never gave up hope.”

Apart from oc­ca­sional vis­its home – in­clud­ing to at­tend a friend’s birth­day party while in a wheel­chair – she was now largely kept at Great Or­mond Street Hos­pi­tal. This was why, in July, she got to meet Prof Maha, who was vis­it­ing to mark the oc­ca­sion of the do­na­tion an­nounce­ment.

“We were told a few days be­fore­hand that there was a VIP com­ing and would we meet her,” re­mem­bers Julie. “Well, Jade al­ways liked meet­ing new peo­ple.

“When she ar­rived they chat­ted about why she was vis­it­ing the hos­pi­tal and then about Jade’s ill­ness and how she found the hos­pi­tal.”

And the pro­fes­sor was just as hon­oured to be there. “For more

The hos­pi­tal has pro­vided treat­ment for chil­dren across the globe, in­clud­ing some 750 from the UAE

than 160 years, Great Or­mond Street Hos­pi­tal has pro­vided chil­dren with the med­i­cal care they have needed, and this new cen­tre will be an ex­ten­sion of this es­sen­tial work,” she said af­ter­wards. “We are in­debted to the peo­ple of Great Or­mond Street Hos­pi­tal who ded­i­cate them­selves to help­ing thou­sands of chil­dren ev­ery year who are suf­fer­ing from life-threat­en­ing and life-lim­it­ing con­di­tions.”

Julie, too, is in­debted to the hos­pi­tal. The ded­i­ca­tion of doc­tors ex­tended Jade’s young life by almost four years, al­ways treat­ing the fam­ily with the care and cour­tesy they needed.

But medics could do noth­ing on Au­gust 6. While back home in East­bourne for an in­def­i­nite pe­riod, the 15-year-old suf­fered a car­diac ar­rest and passed away.

“She came back from Great Or­mond Street on the Fri­day,” says Julie. “The nex­tWed­nes­day morn­ing we were go­ing up to the hos­pi­tal for an out-pa­tient ap­point­ment when she had a car­diac ar­rest… I man­aged to re­sus­ci­tate her but she had another when the am­bu­lance ser­vice and emer­gency doc­tor got there. They couldn’t re­sus­ci­tate her. The en­tire fam­ily is dev­as­tated. It feels un­real still.”

Trib­utes have since poured in on so­cial me­dia – in­clud­ing an emo­tional YouTube video show­ing pho­tos of the young­ster – while Jade’s fu­neral was held in East­bourne on Au­gust 29. Friends were en­cour­aged to write mes­sages on her cof­fin.

A spokesman from her school, Rat­ton School, also paid trib­ute: “She was a very popular girl with both stu­dents and staff, who didn’t al­low her con­di­tion to stand in the way of her com­mit­ment to her stud­ies and friends… The courage with which she faced her every­day life was a con­stant source of in­spi­ra­tion to us all.”

In­deed that in­spi­ra­tion has now led more than a dozen of Jade’s friends to them­selves go on the or­gan donor reg­is­ter. And for that, Julie is thank­ful. Be­cause they are re­fus­ing to let Jade’s death be in vain.

Jade was al­ways pos­i­tive and bright, says her mother With older sis­ter Dani, also adopted by sin­gle mum Julie Dani and Jade on the beach in hap­pier times

Jade with Dani and Julie

Prof Maha with Jade at the hos­pi­tal

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