It’s worst news any par­ent could get.. but we found a way to give our pre­cious son a real fight­ing chance. We look at him now, play­ing squash and win­ning awards, and we are so proud. But, most of all, we have hope

FAM­ILY RE­VEAL HOW CHAR­ITY’S PI­O­NEER­ING BRAIN TU­MOUR TREAT­MENT HAS GIVEN 11-YEAR-OLD NEW LEASE OF LIFE

Sunday Mail (UK) - - The Judge - Heather Green­away

Watch­ing as their triplets dash about the squash court, Cam­ron and Suzan Ma­lik can’t help but smile – be­cause just a year ago they were told one of the boys had only nine months to live.

The cou­ple sus­pected things weren’t quite right with their squash cham­pion son Sum­ner last July when he started to miss the ball but their GP put it down to a virus.

As the weeks passed and the 11-year- old’s game and health de­te­ri­o­rated, his mum and dad de­cided to take him to A&E, where scans re­vealed he had a brain tu­mour.

Last Septem­ber, af­ter more tests, Cam­ron and Suzan were given the news all par­ents dread – their son’s tu­mour was in­op­er­a­ble. They were told he prob­a­bly had just nine months to live.

That was 13 months ago and, not only is Sum­ner still here, he is back play­ing squash with his four broth­ers and sis­ter thanks to pi­o­neer­ing treat­ment made pos­si­ble by Scot­tish char­ity Fund­ing Neuro.

The treat­ment, which in­volves in­ject­ing drugs di­rectly into Sum­ner’s brain, has not only pro­longed the school­boy’s life. It has given his fam­ily and others like them hope.

Busi­ness­man Cam­ron, 50, of Lon­don, said: “It’s been 13 months since we got the news no par­ent ever wants to hear – that our child has a ter­mi­nal ill­ness.

“Af­ter Sum­ner was di­ag­nosed with DIPG (dif­fuse in­trin­sic pon­tine glioma), doc­tors told us he had nine months tops and the best thing for us to do was take him home and make mem­o­ries.

“Even though we were told there is no known cure for our son’s rare and ter­mi­nal brain tu­mour, we were de­ter­mined not to give up on him and started re­search­ing al­ter­na­tive treat­ments avail­able out­side the NHS.”

Cam­ron, who is also dad to Bai­ley and He­ston, both 11, Cur­tis, 18, Perry, 16, and Tor­rie, 13, added: “It was then that we dis­cov­ered the work of neu­ro­sur­geon Pro­fes­sor Steven Gill, of the Bris­tol Royal Hos­pi­tal for Chil­dren.

“He uses revo­lu­tion­ary tech­nol­ogy called con­vec­tion en­hanced de­liv­ery (CED), which de­liv­ers drugs di­rectly to the tu­mour us­ing

mi­cro-catheters – tiny tubes – placed sur­gi­cally into the brain. This method by­passes the mem­brane ‘wall’ known as the blood d- brain bar­rier, which stops in­tra­venous drugs pass­ing from the blood­stream.

“On av­er­age, a child di­ag­nosed with DIPG lives for just nine months but re­sults showed that chil­dren re­ceiv­ing CED treat­ment were liv­ing at least twice that long. We had to give our pre­cious son that fight­ing chance."

Af­ter seven in­fu­sions, Sum­ner’s tu­mour had shrunk by 20 per cent. Last week, af­ter his 10th treat­ment, scans showed that the can­cer is con­tin­u­ing to get smaller.

Cam­ron, who runs a small fam­ily busi­ness with Suzan, 47, is de­lighted with Sum­ner's progress but knows that, even with treat­ment the long-term prog­no­sis isn’t great.

He said: “We are now at the 13-month mark and Sum­ner is still with us and his tu­mour is shrink­ing. The treat­ment has given us all hope – and that hope keeps us go­ing.

“Last month the triplets started sec­ondary school, which was a mile­stone we feared we would never see.

“And a few weeks ago Sum­ner won player of the year at his lo­cal squash club. At one point we felt sure he would never hold a rac­quet

again and there he was win­ning an award. We are so proud of our son. He is brave, com­pas­sion­ate, lov­ing and takes ev­ery­thing in his stride with a huge smile on his face.

“He has no idea how grave the sit­u­a­tion is, nor do the other two triplets.

“Our three older chil­dren are aware of what is hap­pen­ing and they have been a tower of strength to Sum­ner and us.

“We are aware that no child has ever sur­vived DIPG but we are a strong and pos­i­tive fam­ily and are do­ing ev­ery­thing we can to give our boy the best chance.”

He added: “Fi­nan­cially, it has been a real strug­gle as each of the in­fu­sions costs £ 6000 and Sum­ner needs one ev­ery four weeks to keep the tu­mour at bay. The ini­tial op­er­a­tion to in­sert the port into his skull through which the drugs are ad­min­is­tered cost £ 86,000.

“Hope­fully in the fu­ture, if clin­i­cal tri­als show the suc­cess of the treat­ment, it will be­come avail­able on the NHS. But for us that is too far away and we are sur­viv­ing through fundrais­ing and do­na­tions.

“We don’t know what lies ahead but in the mean­time we, like the 40 other par­ents in the UK whose chil­dren are di­ag­nosed with DIPG, are hold­ing on to ev­ery hope.” Glas­gow-based char­ity Fund­ing Neuro are hop­ing to be­gin the clin­i­cal trial into Sum­ner’s revo­lu­tion­ary treat­ment very soon, which will be wel­comed by suf­fer­ers around the world.

Founded five years ago by patent lawyer Bryn Wil­liams af­ter his own di­ag­no­sis with Parkin­son’s at 36, the char­ity seed-funded a ma­jor on­go­ing Parkin­son’s clin­i­cal trial us­ing the CED tech­nique.

While car­ry­ing out the trial, the char­ity re­alised the new tech­nolog y’s po­ten­tial to rev­o­lu­tionise the treat­ment of other neu­ro­log­i­cal dis­or­ders, in­clud­ing DIPG, mo­tor neu­rone di sease and Alzheimer’s.

Cam­ron said: “With­out Fund­ing Neuro, Sum­ner’s treat­ment would never have be­come avail­able so we owe the fact our son is still here to the ex­is­tence and ded­i­ca­tion of this in­cred­i­ble char­ity.”

Hu­man rights lawyer Aamer An­war has be­come a pa­tron of the char­ity.

He said: “Fund­ing Neuro are pas­sion­ate about mak­ing a dif­fer­ence to the lives of peo­ple suf­fer­ing from th­ese fa­tal and de­bil­i­tat­ing dis­eases. They are chal­leng­ing the usual pro­cesses that take so long to get treat­ments from the lab and into pa­tients.

“Their work with DIPG, a con­di­tion that has seen no ad­vances in more than 40 years, has meant that chil­dren who were given a death sen­tence now have hope and a chance of life.”

Sharon Kane, chief ex­ec­u­tive of Fund­ing Neuro, said: “We are de­lighted that Aamer has cho­sen to sup­port us. I know that with his de­ter­mi­na­tion and sup­port we will be able to over­come the chal­lenges we face, ac­cel­er­ate the cures and de­liver new treat­ments.

“Fund­ing Neuro was cre­ated to ad­dress the gap be­tween th­ese ex­cit­ing ad­vances in medicine and the poor prog­no­sis faced by many chil­dren and adults di­ag­nosed with brain con­di­tions each year.

“The next piece of the jig­saw is for us to cre­ate a ded­i­cated cen­tre to of­fer th­ese new treat­ments.

“It would be a cruel irony if we were able to cre­ate highly im­pact­ful and po­ten­tially even life-sav­ing treat­ments but they re­main at a purely lab­o­ra­tory-bound level, de­priv­ing those most in need of hope of the pro­ce­dures they need.”

Kids who were given a death sen­tence now have hope and a chance of life

MAK­ING A RACKET Sum­ner with

h Bai­ley, left, and He­ston, right SPE­CIAL BOND Sum­ner with his mum Suzan and dad Cam­ron. Right, re­cov­er­ing in hos­pi­tal and, above, di­a­gram of his treat­ment

SUP­PORT An­war

CHAM­PION Sum­ner won player of the year at his squash club Pic­tures Jim Ben­nett

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